In early November of 2007, Emma Alyse was like every other happy and healthy 3-year-old preschooler! However, the weeks that followed changed the course of her formative years, which brings us here. Emma had enjoyed trick or treating for Halloween with her two sisters, Carlee and Megan, the week prior. Shortly after, she developed cold symptoms which were treated with over the counter (OTC) medications and home remedies including some chicken noodle soup! The following week, Emma developed a large hematoma on the inside of her knee which prompted an evaluation from her pediatrician. After further evaluation and lab work, we were told that our Emma Alyse needed to be emergently admitted to Payton Manning Children's Hospital in Indianapolis after her lab work revealed a platelet count of 2,000.
As part of PDSA's ongoing commitment to encourage research, increase awareness and foster hope, we trust in the power of the personal journey. Every day, patients and caregivers encounter frustrations and triumphs in managing ITP and the following is a collection of stories from real people sharing their experiences living with the disorder.
IMPORTANT: Because these stories are submitted by actual patients, some entries may contain incorrect information about ITP. Visit the Disease Information section for accurate information.
Do you have an interesting or unusual story? Submit your story here. (Full names and contact information will not be shared).
My ITP journey began in 1990 at the age of 35. At the time, I was eight months pregnant with my third child and was frightened to learn that after some routine bloodwork with my Ob/Gyn, my doctor had serious concerns regarding my extremely low platelet levels. I had never heard of ITP or low platelets before and was scheduled to have a C-Section in just a few short weeks. Because I was pregnant and my doctor could not guarantee that the local sedative or anesthesia recommended for this procedure would not pass through to my unborn baby, a painful bone marrow biopsy was performed without anesthesia or a sedative to determine the cause of my low platelets and rule out leukemia. I was officially diagnosed with ITP the following week and since that time, have struggled to maintain safe platelet counts.
I was diagnosed with ITP when I was 10, and I am now 16. When I was first diagnosed, I had a real fear of needles, so all the blood tests really scared me.
Hi, my name is Hannah. I was diagnosed in June of 2023 with ITP. I noticed some bad bruising one evening, that hadn’t been there that morning, and that same night I got 2 nosebleeds. I don’t ever get nosebleeds. I thought it was odd, so I made a doctor’s appointment and was sent for blood work.
It’s been 7.5 years since my life changed with two late-night phone calls, on consecutive nights. First, by my internist, who referred me to a hematologist the next day. My internist was pretty sure I had ITP. The next night I was told to get to the hospital “ASAP” where I spent two nights trying to raise my platelets to a safe level. Little did I know that this journey would take such an emotional, mental, physical, and financial toll on me. I thought they’d find a treatment and it would be “resolved.”
“You can hold my hand.” A simple gesture of kindness and compassion, as well as just five little words is what carried me through some of the scariest moments of my life. I remember holding my parents’ hand when I was finally given a diagnosis after years of them questioning the doctors about symptoms. I remember holding my grandmother’s hand when I was told that the boy I had befriended at the hospital might not make it. I remember holding my mom’s hand for what felt like a million needle sticks and again when she let me be a “kid” and dropped me off at Victory Junction Camp (a camp for children with chronic diseases).
When I was 16 years old, I was diagnosed with ITP. I was scared, confused, and had no idea what a platelet even was or why my body wanted to destroy them all and was a freshman in high school. That began my journey through hospitals and appointments and too many missed days of school to count. My outlook with this condition has always been to look positive. Life can be messy no doubt, but I don’t give up easily. Even on the days when my body wanted me to.
I was diagnosed with ITP when I was six years old after a rash appeared on my chest. My mother took me to my pediatrician, where I was told I had a concerningly low platelet count and was referred to a hematologist/oncologist. We were at first scared of the possibility of leukemia due to my low platelets and easy bruising and bleeding, but we soon found out I had ITP, a rare autoimmune disorder where my body mistakenly attacks my own platelets. A lot of my diagnosis is a blur to me because I was so young and never really knew exactly what was going on.
I was diagnosed in late January 2014, following an intense bout of norovirus. I showed my doctor what I thought were broken blood vessels along my collarbone from being so ill. She sent me for blood work for three weeks in a row because my platelets were low and they kept declining to about 10,000.
When I got a call with my results, I was told to stay close to a hospital and to wait for a call back about a possible blood transfusion. My doctor was consulting with a hematologist who would provide her with instructions for me. I didn't end up needing the transfusion, but I did go on 60mg of prednisone and was given an appointment date with the hematologist. I went to the hospital for bloodwork (lots of it) and an ultrasound of my abdomen prior to my first appointment with the hematologist.
At the end of September, Global ITP Awareness Week rolls around, and it can be a strange time for someone with ITP; it feels slightly odd to have a spotlight on the thing that is often so private and rarely spoken about. I try to spread as much awareness as possible about ITP, but that comes with a difficult set of emotions to deal with, which is an infinitely more difficult task. I think no matter how much time passes, I will never quite feel the same about ITP on any given day – it’s truly a roller coaster.
I was diagnosed with ITP when I was sixteen years old and have been living with chronic ITP for over three years. ITP has without a doubt changed my life and shifted my perspective on the world.
I was diagnosed with ITP at age 20 – and it was a long process. I was a college athlete, performing as a majorette in my university’s marching band, the East Tennessee State University Marching Bucs. After long practices, I would feel unwell, but I brushed it off as just being exhausted. But the exhaustion seemed to never end.
I visited my primary care doctor complaining of dizziness and numbness and was referred to a hematologist. It was clear that I was anemic; I was deficient in vitamin B12 and iron. However, my bloodwork revealed more problems, including a platelet count of 30,000.
I was first diagnosed with ITP 16 months ago with a platelet count of 1,000. I was initially put on steroids for a week, but my platelet count remained below 10,000. I was then given IVIG, and my platelets finally bounced back to over 100,000 and I was released from the hospital. Unfortunately, within a week my platelets plummeted back to below 10,000 and I was readmitted. IVIG was used again to bring my platelets back to over 100,000 within five days, but they dropped again, and I was given Promacta® in addition to another round of IVIG.
In high school, my favorite activity was Color Guard. It’s a sport about creating choreography and creating shows with popular music and competing at different schools. I loved Color Guard. It was – and still is – my passion, but I was unable to continue when I was diagnosed with ITP because of the equipment involved that you must toss in the air and catch.
I didn’t think much of the risk. My director had choreography that involved us going on the floor and I would always get hit in the head before I knew I had ITP.
I considered myself to be a pretty healthy adult, until I had my Medicare physical at the age of 65. My doctor informed me that I might have ITP because my platelets were at 90,000 and referred me to a local hematologist. The hematologist ran several tests and concurred that I did in fact have ITP. He then sent me to a rheumatologist because I had also tested ANA-positive. He ran tests as well, and said he was sure I had lupus. So that’s two! I was able to avoid being treated for ITP because my platelets were hovering around 50,000 - 80,000, and I received no treatment for lupus because I wasn’t having any symptoms.
My life changed on May 1, 2004 at the age of 60. Before that, I had a fairly normal life – I had been married to my husband Jim for over 40 years, raised two children, worked full time and exercised four days a week. On the morning of May 1, I woke up with red spots all over my arms and legs. I was recovering from pneumonia and on antibiotics. My first thought was that I was having a reaction to the drug, so I called my internist who got me in his office that afternoon. After discussing what was happening, he did a stat blood test and left me in the examining room to check on the results.
A short time later, I heard him outside the door say, “Oh my God.” But he didn’t come right in, so I thought his remark had nothing to do with me. Not so. He had gone down the hall to check with a hematologist in the building. When he came back, he explained what platelets are, got my husband from the waiting room, and sent me down the hall where the hematologist was waiting to do a bone marrow extraction and start an IV. He called ahead to the hospital and sent me on my way.
You’ve likely heard the metaphor, “the glass is half empty/full.” How full is your glass? If you’re looking on the brighter side of life, it’s always half full. But what about those who have no choice but to have a glass that is consistently half empty? This is how I look at my bleeding disorder, immune thrombocytopenia (ITP).
When did I get ITP? I will never forget it … I was 13 years old and just about to blossom. My future was bright, and my ambitions were even brighter. I told myself I could be anything I wanted to be and so I was striving to do so. I was aiming to be everything that I ever dreamed of.
At the age of 13, I won “Young Authors,” was writing frequent articles as the lad on the school newspaper, a leader of my school’s student body, star track athlete with an outstanding long jump and an amazing five-and-a-half-minute mile, co-captain of the cheerleading squad, and a straight-A student, running for graduation court and valedictorian of my graduating class.
I was the little girl who strove to break glass ceilings. Except my glass was half empty. My platelets were “half full” and they were quickly depleting. Every ounce of energy that I put out only made me sicker. But I didn’t know this yet. I had no idea that the malaise that I felt, the bone pain that was nagging me and bruises that would visit me, was in fact a platelet disorder that was soon to threaten my life.
I was diagnosed with ITP in February 2018 at the age of 15 after a simple checkup for anemia because of heavy periods. At 11:00 PM on the evening after my blood test, we received a call saying that I needed to go to the hospital immediately because I might have ITP. I’d never heard of the condition before, but considering I was called so urgently after-hours, it terrified me.
On January 31, 2018, my count was 12,000, and on February 1, it was 8,000. I was not hospitalized, and I did not receive any treatment.
Before my diagnosis, I was a gymnast and a figure skater, but I had to give up both sports because of the risk of bleeding. I also wasn’t allowed to play sports during gym class, and a lot of my classmates didn’t understand why because I didn’t “look sick.”
I was diagnosed with ITP in 2019 on my 35th birthday. A five-day stay in the hospital was not at all how I planned on spending my birthday – or the rest of my life. I think I was in denial after my diagnosis. I thought it was a fluke, just a one-time thing, and I wasn’t going to have any more problems. But then, nine months after my diagnosis, I relapsed. And so began my journey on the ITP rollercoaster.
Like all five-year-old kids do, Oliver got a bump on his head playing around. His dad and I initially laughed at it because Oliver’s school picture day for kindergarten was just a few days away. But within hours of the bump, a bruise had formed and took over half his face. Throughout the day as things got worse, I checked in with some family and friends who were in the medical field, and everyone agreed that it would get better soon and there didn’t appear to be any damage. The next morning, Oliver’s eye was swollen shut and the bruising was very dramatic. We immediately called our pediatrician’s office, and there was definite concern and confusion over the bruising on Oliver’s face. Our doctor suggested I bring Oliver to the hospital – not the one we would normally go to, but Strong Golisano Children’s Hospital – and get a CBC.
Who would have thought my entire life would change on a Tuesday in April of 2021? Navigating a pandemic is hard enough when you’re healthy, let alone when your world gets turned upside down by an ITP diagnosis.
There were signs I completely ignored in the weeks leading up to my diagnosis. My period was unusually heavy, but I shrugged it off. I’d floss my teeth and my gums would still be bleeding the next morning, but I just thought it meant I should floss more often. A chip clip snagged my arm, giving me a large bruise, and I just laughed at my clumsiness.
Then one morning I woke up with what I assumed was heat rash on my chest and arms – I thought it was odd but didn’t give it much thought beyond that. But as the day went on, it continued to spread across my body, and when I noticed the spots inside my mouth, I started to worry that something else was going on. By the evening my body was covered, and my boyfriend thankfully convinced me to go to urgent care, even as I insisted that we should wait another day. Urgent care recognized it as petechiae right away and sent me straight to the emergency room.
About seven years ago I was off from work, so I enjoyed a day out with my friends. I came back home and had just started cleaning my room when I noticed blood on my hands. I started looking at my hands to find where I had cut myself, then noticed my nose was wet and when I wiped my nose, I saw blood. I realized the blood was coming from my nose, so I laid down for a bit. About an hour later I noticed very small, tiny red dots on my feet. I began to worry. A few hours later I tasted blood in my mouth – I knew it was not from my nose but from a tooth that needed to be extracted. It was late at night and the bleeding wasn’t too bad, so the next morning I went to my family doctor. He said he had no clue what was happening to me and sent me to the hospital.
In 1999, I noticed a lot of “spots” all over my body. I went to the doctor and even they were perplexed. Some bloodwork was done, and I went on to work. It was a shock to get home that night to a message on the voicemail, telling me to get to the hospital immediately. My platelet count was below 5,000. That was my first dance with ITP.
When I was ten years old, I was playing at school and noticed purple spots around my neck. I went for a blood test and my general practitioner phoned and told me to go straight to the hospital because my platelet count was so low. This happened every time I had a blood test. Sometimes my platelet count was less than 5,000!
I was covered in bruises and had a bloody nose nearly every day. If I went from a cold place to a warm place – and vice versa – it would start bleeding. One time I had to be admitted to the hospital because I had a bloody nose that would not stop bleeding. I enjoyed my sports and was playing football and hockey, but wasn’t allowed to play rugby. It was all dangerous, but I was very determined and so I carried on playing sports.
I am a 55-year-old career-oriented woman, and this is my ITP story.
I was first diagnosed with ITP at 17 years old, but I began having consistent nose bleeds and blue-black bruises when I was about 7 years old. I was hospitalized after a blood test showed a platelet count of 5,000 and the doctors put me on prednisone – 3 tablets, 3 times a day – hoping it would raise my counts, but it did not. I could not play sports anymore or participate in any kind of physical activity. I was also told to stop school because any kind of fall could cause cerebral bleeding, but I continued attending school anyway. I live on an island in the Caribbean and had goals and dreams I wanted to pursue, but my life turned upside down between the steroids, weight gain, stretch marks, excessive eating, hospitalization for heavy bleeding, and drug-induced diabetes.
I am a chronic ITP patient. I was diagnosed when I was four years old. All of a sudden, I saw bruises and petechiae all over my body, and then I found out about ITP. I have gone through so much pain and mental and physical stress. Anxiety, fatigue, and depression are part of my daily life, and I suffered from the effects of prednisone. I hit a low when I stopped responding to the prednisone, then the IVIG failed and my last option was a splenectomy. Even after the splenectomy, I relapsed twice, but I believe in God who gave me strength and power.
Now it’s been 25 years of my ITP journey, and I didn’t give up on spending my life as a normal healthy person, but sometimes it is really difficult. My ITP story is long, but now I am a part of the PDSA community, and it really is a blessing for ITP patients.
I was diagnosed with ITP when I was eight years old.
I was on a Disney Cruise with my family when my mom noticed big bruises all over my body. We assumed that it was just from being in the pool with other kids, but as the trip continued, we realized the bruises were getting worse and did not seem to be coming from any sort of injury. As soon as I got home, we went to the doctor, and I got bloodwork done to check my platelet count. My pediatrician called my mom and told her to drive to the hospital as soon as possible. There, I was given an IVIG treatment and diagnosed with ITP. When I got home from the hospital, I went to play with my sisters like normal, but my mom rushed in to tell them to be careful around me.
JJ is five years old and was diagnosed with ITP in June 2019 at just 3 years old. In the short two years since diagnosis, he’s endured over 110 “pokes,” has been on oral and IV steroids, had 14 IVIG infusions (thanks to generous donors), WinRho® infusions, and six emergent hospital says. He is now classified as having chronic ITP.
I was diagnosed with ITP shortly after my 40th birthday. I had been experiencing unexplained bruising and fatigue, and when I went to the hematologist my platelets were at 74,000 – low, but not dangerously low. My hematologist put me on dexamethasone and told me to come back in five days to check again. When he said I could bring my husband to the next appointment, I knew this was more serious than I had initially thought.
By my second visit, my platelets had plummeted to 4,000. The hematologist did an emergency bone marrow biopsy and sent me directly to the emergency room. So began my roller coaster with ITP.
My name is Haley; I am 30 years old and was diagnosed with ITP in 2020. On top of the COVID-19 pandemic, an ITP diagnosis was not an easy thing to navigate!
Prior to my diagnosis, I began having some odd bleeding symptoms, but had been noticing excessive bruising and fatigue for the last few years. I had my daughter in 2016, and it seems that the symptoms started sometime after she was born.
In the summer of 2020, I started having long-lasting bleeding episodes which I attributed to a hormone problem, so I saw my OB/GYN. My husband and I had been trying to conceive for a few months at this point, so it was good to get a check-up anyway.
I was diagnosed with ITP at 16 months old, with a count of 8,000. I am now 33, so going on 31 years of my ITP journey. I’m now considered in recovery with counts near 200,000. My history with this autoimmune disorder is long.
When I was first diagnosed, I was covered in bruises and petechiae and at the suggestion of a family member, my parents took me to the doctor to see what was going on. I had a bone marrow biopsy to rule out leukemia, and after my platelets didn’t rise after six months, the diagnosis was later changed to chronic ITP.
My treatments were steroids and IVIG from age 16 months to 11 years old. I had a treatment every four to five weeks and treatments only raised my counts into the 50s. At 11, treatments changed to Anti-RhoGAM slow IV push. This did not raise my counts for long either, but the nice part was that it was a 60-minute IV push instead of a 16-hour hospital stay IVIG treatment. It was tough being in a wheelchair at school with an IV in my foot for those longer treatments. I also had a para-aide at school to keep me from getting into harmful and unsafe situations such as crowded hallways and busy classroom activities and recess. I wore a helmet and knee pads on the playground and bus to prevent injuries as well. It was a humiliating experience. My aide was also responsible for flushing my IVs and handling excessive random nosebleeds.
I was diagnosed with ITP in 2004, around 10 years old. I was playing peewee football and halfway through the season I started developing HUGE softball-size bruises during my games. Once my parents figured out this wasn’t normal, they took me to the emergency room and I spent about a year in and out of Valley Children’s Hospital in Fresno, California, doing multiple tests – including a bone marrow test – to figure out what condition I had. Once it was narrowed down to ITP, I went to Valley Children’s weekly to monitor my platelet count. I never received any treatment and about nine months later my count had stabilized, and I was able to get back to my normal life. I thought I had beat ITP and was past it. I was able to get back to sports, playing outside, and simply just being a kid. That was supposed to be the end of it – until it wasn’t.
I developed life-threatening, crashing platelet counts so severe that for seven months I needed IVIG every 10 days along with daily Promacta®, steroids, etc.
I was first diagnosed with ITP in April 2017. My body was full of bruises and my platelets were at 7,000. It happened within weeks of returning from a trip abroad where I rode horses and water slides in the jungle. I developed life-threatening, crashing platelet counts so severe that for seven months I needed IVIG every 10 days along with daily Promacta®, steroids, etc. (except for the month I was on heavy-duty antibiotics).
My dancing friends didn’t understand why I couldn’t go ‘full out’ [at training] since I didn’t ‘look’ sick.”
I was diagnosed with ITP in 2018, when I was 17 years old and in the middle of Year 12 (I’m from Perth, Australia). Suddenly I faced a constant stream of ineffective treatments, including steroids where I couldn’t concentrate at school and IVIG doses that gave me meningitis. I had to skip school for twice-weekly blood tests and family members tried to help by testing me on schoolwork during 6-hour infusions. I was a dancer who trained nearly every day, but this had to be cut back as I would come home with bruises from rolling on the floor or from my pointe shoes. My dancing friends didn’t understand why I couldn’t go “full out” since I didn’t “look” sick.
Finding others to connect with can help you find the strength you need to accept your diagnosis and feel less alone.
I was diagnosed with ITP in 2011. My platelet count at the time was 5,000. I learned this after months of feeling ill followed by weeks of having bleeding issues and many days of asking doctors to do a CBC because I knew something wasn’t right. When I finally did get lab work, the call I received told me to pack a bag, head to the local cancer center, and under no circumstances was I to drive myself. This platelet count meant that I was at high risk of internal bleeding that could be hard to stop even with medical intervention.
There is no test to determine the cause, and determining a treatment is often a process of trial and error once more common causes such as cancer have been eliminated. The first line of treatment for me was the corticosteroid prednisone, a drug whose side effects are body- and mind-changing but works for most at suppressing the immune system and thus stopping the body’s ability to destroy platelets. When my platelets began to drop as I tapered off prednisone over a period of four months, it was decided I would have my spleen removed. After my splenectomy I developed a life-threatening blood clot in my portal vein (PVT) that was treated in the hospital for two weeks as it was difficult to monitor keeping my platelets high enough that my blood would clot, yet being treated with IV blood thinners and monitored closely to attempt to dissolve the portal vein clot.
Working towards normal and taking it one day at a time
When I was a teenager I always bruised after sports. I got married and was a father at 19; then in my mid-twenties I lacked energy at times, so I began getting tests. I felt like a pin cushion with monthly visits and blood tests – my platelets were hovering around 20,000 or dipping as low as 12,000. I was offered steroids but refused, and over the next thirty years or so, I slowly reduced visits to yearly. About ten years ago, my counts were hovering around the same range – between 12,000 and 25,000.
Let’s backtrack to early March 1995, when I went to get a blood test required to apply for a marriage license. When I went to pick up my results, the doctor was concerned because the test came back positive for an STD, but when he had the lab retest it, it came back negative. He told me something was wrong and I should see a specialist.
I saw a specialist at the end of March and was admitted to the hospital that day. The first possible diagnosis was leukemia or HIV. Now, I only had one sexual partner. I bruised easily and I had anemia when I was 12 years old. Those were my only two symptoms. I was tired, yes, but I worked full time at 22 years old and was going to college, too.
“I decided to not give up hope”
I’m Preeti, a twenty-seven year old ophthalmology resident. I was diagnosed with ITP one year ago, and being in the medical field, it was very tough for me to accept it. My platelet count was only 5,000. I was admitted in PGI Rohtak (India) for one week. I was able to recover without any treatment that time. So at this point it was an acute kind of thing, which I was very happy to hear, and everything was good.
But just three months after that episode, I observed small petechiae and bruises on my legs. I rushed to the hospital again and my count was at 4,000. I was shattered. I was not able to think anything positive at that time. My parents took me to Medanta Gurgaon (a prestigious private hospital in NCR) and I was admitted for a few days. They prescribed me a 60 mg dose of steroids, and I stayed on steroid therapy for six months with regular blood tests. Everything was fine except the horrible side effects of the steroids. I gained almost five kilograms with baby fat on my face, acne, and developed new fine tremors. Being in the surgical field, of course the tremors were the biggest challenge for me. I didn’t lose hope, and tried regular exercises and dietary modifications.
“I listen to my body to rest when I can”
“June 28, 2019 started out as any other normal day with waking up, a morning devotional, and reading my newest book before heading off to work. I was feeling very exhausted, but I wasn’t going to complain, as I work as an inpatient physical therapist in an acute rehabilitation hospital and my case load consists of patients recovering from strokes, brain injuries, and amputations. Once at work, I received a text from my husband to call my primary doctor, as the doctor was trying to get a hold of me. I called the office and that is when my life changed. My primary doctor informed me I needed to get to the Emergency Department immediately, as my platelets were at the critical level of 10,000. God is so good, and I was spared from having any neurological deficits, and my doctor was able to save my life.
My name is April Brimmer. I am 34 years old and I have ITP. I never knew what a platelet was, let alone ITP.
It was July 6, 2012, and I was bleeding extremely heavily due to my menstrual cycle – so much that I blacked out and had to be rushed to the emergency room. The doctors ran multiple tests and after several hours said my platelets were at 3,000. I thought, great, they found out what it was, now I can go home to my one-year-old daughter. But that was not the case. I couldn’t leave the hospital and I panicked. I had never been away from my only child and had nothing prepared for her – that was the worst feeling.
I was admitted to the hospital for two weeks. No amount of steroids or injections worked. I met with a hematologist that suggested IVIG, and it sustained my platelet count for approximately three weeks. For one year straight, I had to be admitted to the hospital once a month for four to seven days at a time for IVIG treatments. I also had my spleen removed.
“Being diagnosed with ITP made me more in tune with my body.”
It was summer 2014 – I had just graduated with my Bachelor’s Degree in Psychology and was visiting my friends and family back home. My father told me, “Nik, you look like a cheetah! You need to go to the doctor.” You see, I was covered in bruises. Not just a random bruise from running into something that you don’t remember running into – they were all over. We all assumed I was anemic, no big deal. I went to the doctor and received a physical and lab work.
One week after that appointment, my doctor called me and said I needed to come in ASAP for more testing. In my head I thought, “What the heck,” but went back in as directed. It was at this appointment that the doctor told my mother and me that my platelets were extremely low, and I needed to see an oncologist. First of all – what are platelets? Second – oncologist?! Like for cancer?! I started crying as my mom held me.
This story is adapted from a letter Amanda wrote for a doctor in New York City, September 2019:
Nineteen years ago, I was diagnosed by a doctor in Syracuse with ITP. I had frequent bruising, severe bloody noses, and migraines when I was a child. I was hospitalized for some of the bloody noses and migraines.
Back in April 2008, I had an emergency C-section. I had developed preeclampsia and toxemia during my pregnancy around 20 weeks. I was taken out of work and put on bed rest. I became very sick the night of April 13, 2008, and the early morning of April 14, 2008. I was taken to the hospital in Binghamton, then transferred to Crouse Irving Hospital in Syracuse, NY. I was in a lot of pain from my organs swelling. My platelets dropped from 30,000 to 15,000 in the time it took me to get from Binghamton to Syracuse. They did not perform my C-section until 10:38 p.m., as they needed to give me platelets beforehand. My daughter was born at 1 pound, 8.5 ounces, 13 inches long. The doctor who did the procedure told my family that it was up to me to stop bleeding. Thankfully I pulled through. I recovered at the hospital for a few days and then stayed at the Ronald McDonald House in Syracuse until my daughter left the NICU to come home – about a week before her July due date.
I’ve been wanting to share my story for some time now but have reservations because my feelings and values do not align with our culture at large. During the course of my journey I have had many people suggest or tell me that I am “wrong” or “deluded”, express concern and try to convince me to reconsider using drugs or surgery to elevate my platelet count. While I certainly understand their fear and appreciate their concern for my well-being, these interactions only served to make me feel hopelessly lost and alone. I desperately needed to be heard.
My hope is that perhaps there is someone else out there in the ITP community that feels like a “misfit” (in whatever way that may be) and my words may help them feel connected and understood. It is NOT my intent to criticize how others feel and choose to address their own health. Rather, my goal is for mutual understanding and respect. I strongly believe in the power of human connection. PDSA has been a game-changer for me in that it has put me in touch with a community of other folks who are also living with this condition that most of us have never heard of until someone told us we have it. Regardless of your platelet count, symptoms, or what living with ITP personally means to you, we share this common thread, and we’re all in this together.
I have had ITP for 44 years now. I was first diagnosed at age 12, with a platelet count of 8,000. At the time, I was one of only five known cases in my state of Nebraska. I was hospitalized for four days with no treatment and my count came up on its own. I was told the ITP would never occur again, but I came out of remission 28 years later while staying with friends out of state. I went to the nearest emergency room and was given an IV of steroids, and then was sent home with steroids.
Yes, I don’t look sick and I don’t want to.
In my 7 years (and still going on, it’s chronic) of a battle with ITP (an autoimmune disorder that attacks my platelets keeping my platelets low ALL the time making me vulnerable to infections) I had never been vocal about my illness on a larger platform. Only very few close ones know my everyday struggle with fatigue and the restricted and altered (though good in some ways) lifestyle. No regrets though till date. But today, with the coronavirus pandemic I felt the urge to pen this down in the hope to SENSITIZE the people on the importance of STAYING AT HOME. You might feel you are healthy, and your immune is quite strong that a little walk by the roadside or a stroll in the park or a visit to the worship place or a quick buy from a grocery store in your area wouldn’t attract the virus. But let me tell you, everyone in China or Italy or Canada who are quarantined and forced to stay at home might have thought the same as well. We tend to overlook the seriousness until and unless we are personally affected and the worst part is, we don’t even know that we are affected until serious symptoms show up and by then things could have gone out of our hand.
This personal story is dedicated to my loving husband
ITP Warrior for four years.
Our overwhelming journey began in April of 2015. My husband Rene noticed that he had developed bruises on his body. They were on his ankles, arms and stomach and he had not bumped into anything. He did not go to the doctor because he had to go to work and did not want to take time off. That same month in April, Rene had a car accident, so he went to the hospital’s E.R. to get checked out. He was checked for any injuries and was cleared from any injuries caused by the accident, but to our surprise, the doctors informed us that his platelets were at 3,000 and that he had ITP. We both just looked at each other and were so puzzled. “What is ITP?” we asked. The doctor explained in detail and that was when our world was turned upside down. It was a nightmare for both of us, especially for my husband who was diagnosed with a condition that many, including us, have never heard about and didn’t know existed.
Welcoming wandering warriors into a rare and instinctively remarkable family.
In March of 2010, Canadian ITP patient and advocate, Dale Paynter became aware that he had a low platelet count after a company medical screening – a requirement of a medical surveillance program for environmental engineers – which led him to schedule a visit with his family physician. What ensued over the next several months and years would lead him on a global journey that he could never have imagined.
“Outside of the fact that the first time you hear of something is when you are told you have it is unsettling, it’s also what makes it so hard to talk about,” began Dale. “There’s more of us out there than we think, more that are talking about it, and we need to spend more time and effort – for more public awareness. You can’t be alone with this. I can’t imagine how people lived with this before support and awareness came into being - living a whole life without having anything or any way to communicate with others who understand. I couldn’t do it,” he said.
After 16 years, this Warrior is learning how to live with her “new normal.”
While writing this, my heart breaks for others who are suffering from ITP.
I will be turning 28 and fighting 16 years of severe ITP. It started in sixth grade, when I was 12 years old, and I thought for sure that it would be gone by now. I’ve tried more medicines, doctors, “crazy” doctors, and traveled all over the United States in desperate hope of healing from this. It’s been years and years of being raced to the ER for internal bleeding.
My platelets like to stay under 10,000. When I was 16, I got meningitis and was flown to a larger hospital because my liver was failing. I lived but suffer from severe seizures ever since then. This past December I had my second brain surgery to hopefully remove the big scar on my brain and help my seizures. My first surgery didn’t work, but I am still hoping for this second one. Brain surgery in general is high risk, but because of ITP, the risk for me was potentially fatal.
Finding moments of humor to relieve times of uncertainty
When I was two and a half years old, I had a swollen lymph node under my jaw, was covered in petechiae and bruises, and my platelet count was 2,000. My oncologist at the time had run numerous tests, and though he was great, he was never able to give me a diagnosis.
Fast forward to age 13, I was released from care with no answers, but I was healthy. Weird things would happen, like getting sick 10 times worse than other people, but it was what it was.
Fast forward again, this time to 2016. I was watching my favorite show, “Grey’s Anatomy,” with my best friend. On this particular episode, they were performing surgery on a man who they figured out had ITP based on how the operation was going. I looked at my friend and said, “That sounds like my childhood!” So, I investigated. I was convinced.
A mother’s moving story, new-found mission and quest to heal.
My name is Donna and I have had ITP episodes 3 times in my life. My son Devin also has suffered with ITP and he had 5 to 6 episodes. The reason I am sending in our story now is that my son Devin passed away from Intracranial hemorrhage complications from ITP on September 20, 2019.
I feel that we have become almost desensitized to the symptoms of ITP after several occurrences, and maybe the doctors are releasing us to soon and with too low of a platelet count.
On September 1, 2019, Devin saw petechiae on his hand and a very small amount on his foot. Nowhere else. No blisters in his mouth at this time, so I told him we would watch it and go to the doctor for bloodwork on Monday, unless more symptoms occurred. The next morning, Devin had mouth blood blisters and more petechiae. We immediately went to the ER and they had him taken to Children's Hospital in St. Louis because his platelet count was 2000. This is how low his platelets have dropped with the other occurrences of ITP as well.
They kept Devin overnight that night and gave him IVIG fluids and the next day he received Rituximab IV fluids. He was released that night to go home and rest and have blood work done every other day as the Rituxan can take a few days to start really working. I was uncomfortable leaving with platelets under 10,000, but the hematologist assured us it was normal to take a few days and he should stay home from work and school.
Nosebleeds, petechiae and the fear of never bearing children: now a distant memory.
I was diagnosed with ITP when I was 16 years old. I kept getting nose bleeds that would last for hours and bruising all over. I remember seeing red dots cover my skin, not knowing that it was petechiae. I finally went to the doctor when I had a nosebleed that lasted so long, I passed out. When I got to the doctor’s, they did what I remember them calling a “bleed time test” to time how long it took for three small pricks on my arm to stop bleeding. They went through at least 50 sheets of filters absorbing the droplets of blood as minutes passed and passed.
The longer I sat there, the more doctors and nurses would come by and check on me, and the more the staff began to whisper outside the exam room door. I remember my mother getting more and more nervous as she flipped through a magazine. I know now, looking back, that she wasn’t reading a single page. She was trying to appear calm for my sake, but she must have been so scared.
Finally, they sent me to another room and the doctor came in. He started by saying that I have symptoms of a serious problem with my blood. His exact words were, “We don’t think it’s leukemia, but we need to find out immediately what is wrong.” He then went on to explain blood platelets, which neither my mother nor I had ever heard of. He explained that normal counts were above 250,000 and my lab showed that I had 11,000. He said, “I cannot believe you are not in a coma right now.”
Staying levelheaded while bouncing back from a life-changing visit to a walk-in clinic.
My name is Carter Sanders. February 2018 changed my life forever, as well as the life of my entire family. One Tuesday evening that February, I noticed some red bumps on my arms. I thought that was unusual and figured it couldn’t be chicken pox because I had them when I was 5. I assumed it was likely an allergic reaction since I was sweeping the floor that day. Then over the next couple of days, I noticed some blood blisters on my tongue and cheeks. I thought it might be hand-foot-and-mouth, considering I had that in the summer of 2014. I didn’t remember having those blisters in my mouth, but thought maybe it was a symptom that didn’t occur the first time I had the virus.
I was mistaken. I called the doctor to make an appointment to confirm the diagnosis, but he was out of the country. Since he was unavailable, I went to the Walgreen’s take-care clinic. Before I got there, I noticed an alarming symptom – my right eye was bloodshot. At the clinic, the nurses were astonished by what they saw. They told me it wasn’t hand-foot-and-mouth, but that it looked like some sort of bleeding disorder and that I was going to have to go to Urgent Care to get an immediate blood test.
A fighter’s lucky break.
I was diagnosed with ITP after suffering from heavy bleeding and undergoing a second blood transfusion. Although I was unable to come off steroids without dropping down to zero, I was lucky enough that six months after my diagnosis, I was able to go on a trial drug – eltrombopag – as an outpatient with my spleen, much to the disapproval of doctors. This helped for a year and a half before I stopped responding.
I went back on steroids as another trial was opening up soon. I waited months before I could start this treatment because I needed to have platelets less than 30,000 and could not be on any more than 10mg of steroids. This was a tricky situation to balance. I ended up plummeting and was admitted into the hospital with internal bleeding. It took five days to respond to a combination of immunoglobin and steroids, and I nearly had to have an emergency splenectomy.
(As told by her Mom, Sarah)
Skyla was diagnosed with acute lymphoblastic leukemia in March 2016, and three months later she was diagnosed with ITP.
Treatment was underway for the cancer and ITP pretty much took a back seat, although her counts were constantly under 10,000. She often had blood blisters on the tongue, inside her cheeks and lips, and suffered a few episodes of uncontrollable nose bleeds which saw her admitted into hospital for a few days receiving bags and bags of platelets and blood.
Then came June 2017, when ITP didn't want to take a back seat anymore.
One day she started getting sick, and it was one illness after another. She complained of headaches every now and again, but it was the sickness that stood out more. I assumed she had a stomach bug, and since she’s also an oncology patient, I called the hospital to tell them about this “bug” and how bad it was. They suggested I bring her in to be checked over by a doctor. The hospital is an hour drive away, and she was continuing to vomit in the car and was getting very sleepy. I got her to the ward and a doctor checked her over, saw how lethargic she was, and we both just put it down to this “bug” taking all the energy out of her. She was admitted into a ward and started IV fluids.
No apologies, just a slow and steady stride to the finish line.
I was seven years old when my parents got the news that I had ITP. I had been feeling very tired and getting unexplained bruising. The extreme tiredness worried my mom most. I was admitted to a children’s hospital where I stayed for two months. No treatment, and my body started producing platelets again. That was 1979. I got on with my life.
In 2004, at age 31, I got a stomach bug which lasted a few days. Nothing unusual there, but I couldn’t seem to shake it and over five days I just got weaker. I was admitted to the hospital on day six, where they discovered I had AIHA – auto-immune hemolytic anemia. I had a virus and my immune system started attacking both the virus and my red cells. My red cell count was at 3,000 and I needed 11 blood transfusions and huge amounts of steroids and other drugs to keep me alive. I developed acute chronic fatigue and many other horrible side effects from the steroids, but after about a year I could say I was living normally again with no lasting damage.
Then strike three. In 2017, at age 45, I started noticing bruising. I went for a blood test and got a phone call from my doctor at 9:30 that evening. I needed to go straight to the hospital. My platelets were being destroyed and my count was less than 10,000. ITP again. This time they started steroid treatment right away and my platelets came up. But over the next two months, as we started to reduce steroids, my platelets dropped again and after four months I started on eltrombopag. I am still on that a year later.
At 78 years young, this former teacher continues to enlighten and touch the human spirit.
Jerry Jones considers herself one of the “lucky ones.” As a retired high school science teacher whose classroom was “connected” in 1995, Jerry mastered two skills essential to patient advocacy: identifying the problem and gathering information. Jerry knew that scientific studies are designed to answer specific questions on how to prevent, diagnose, or treat diseases and are critical factors in improving methods of health care. She also knew she had a global network of information and communication services at her fingertips and by entering a few select key words she could unleash a knowledgebase packed with the power to overcome ITP.
In November 2010, Jerry had some testing done when she happened to visit a health fair at the local hospital and the results revealed a 64,000 platelet count. Already scheduled to see her family physician in December, she brought the results with her. Concerned with the results, he checked her platelet count the day of her appointment and found that her count had dropped to 54,000. Jerry recalled how he was swift to point out that he didn’t feel that she had cancer but felt she should be seen by a specialist. “I’m sending you to see a hematologist and you are going to see the word ‘oncology’ on the door, but I don’t want you to worry. This is who you need to see,” he said as he reassured Jerry that he didn’t think it was cancer.
Perspective: A little boy touches the heart of a little girl with ITP in a big way.
“I’ve been through a lot,” began eighteen-year-old Talon Crist, “but every time something seems so bad, I think about how it could be so much worse – even on my lowest of days,” she continued. Talon’s journey with chronic illness began with an ITP diagnosis at age eleven and now includes other serious health issues and diagnoses, yet she sums up her journey in one word – perspective.
“When I think back to my life before I found out I had ITP, I think about having fun with friends, doing jujitsu and other sports – especially running – I loved to run. I had a ton of energy and was out doing what I wanted to do, but when I went to the emergency room for that bloody nose, my mom and I didn’t realize that it would hit me so hard,” she said. Talon recalled how they thought that ITP would be a “quick-fix thing,” that she would go home, the immune thrombocytopenia would go away, and she would get back to living her life, but what followed were daunting symptoms and horrendous treatment side-effects. “I had blood blisters in my mouth and throat, a ton of bruising – I had a really huge bruise on my hip - it looked like I was thrown down a flight of stairs and I remember people asking if my parents had done something to me and I would say no, but even walking in the halls at school was hard because being bumped with backpacks would even make me bruise, “ Talon recalled. “The weight gain from the steroids I took made me look like a chipmunk. My face was super round and chubby and I was eating all the time. Everything hurt, I was always tired, and my emotions were off the wall,” she exclaimed.
Diagnosed at age 4, Barbara Pruitt reflects on the challenges, celebrates the triumphs and looks to a bright and hopeful future for people with ITP.
As Barbara Pruitt stood greeting new attendees at ITP Conference 2018 she was introduced to a couple intrigued by the details of how she manages the disease. “You live with a platelet count under 10,000,” exclaimed the attendee, “I can’t even begin to imagine how you do it!” Barbara smiled, shrugged her shoulders and replied, “I’ve had ITP since I was four. It’s all I’ve ever known.” In living a lifetime with the disease, Barbara has certainly seen the outlook for people living with ITP change.
“I didn’t know anything was wrong,” Barbara recalls, “but my mother was really worried about all of these black bruises I had.” Growing up with three brothers, Barbara’s mother questioned the older two about fighting with their sister, but a visit to the doctor revealed what, back then, was called thrombocytopenia. In the 1960’s, along with the diagnosis came one therapy to treat ITP - steroids. “It was hard, there were severe side-effects – weight gain, water retention and sleepless nights,” she said and after three years of trying to control the disease with steroids, Barbara’s parents and hematologist decided it may be time to try removing her spleen.
How a little ITP Warrior transformed his journey into an adventure and gave back.
There are those who live life by the proverbial phrase, “When life gives you lemons, make lemonade.” And there’s the Krueger family, who when life delivered an ITP diagnosis to seven-year-old Cayden, they redirected the course down a road to adventure. Diagnosed just a few years ago at age six, this little warrior and his family refuse to let ITP win the battle.
Cayden’s journey began on summer vacation when his mom Jennifer noticed bruising – lots of bruising - bruising in odd places. As with most little boys, Cayden loved to play, loved contact sports and more than anything, loved wrestling with his then 16-year-old brother Cody. As a mom, Jennifer chalked it up to normal roughhousing and asked the boys to curtail the intensity of their moves, but as a nurse, she continued to monitor his condition. “When bruising got to the point, where as a school nurse I felt I would be calling CPS, I knew it was time to take him to the doctor to see if something was going on,” said Jennifer.
By Cyma Shapiro
Reprinted with permission, Matthews Beacon 2018
When the curtain goes up for the “Nutcracker,” danced by the Matthews Ballet and Dance, at the McDowell Community Center, one dancer in the group will be happy to be alive, well, and again dancing in this year’s production.
Matthews resident, Caroline Kramb, has been dancing with this group since she was four years old. She is now 15 and has taken on such roles as Angel, the lead – Clara, Chinese, Ginger Child, Waltz of the Flowers, Candy Cane, Spanish, Gold Angels, Party Girl and Soldier.
This year, as in previous years, she will exude the joy and passion that dancing invokes in many. “Caroline is a dedicated student with a passion for dance,” said dance studio Program Director Amanda Sheppard. “She loves performing onstage, and is always a joy to watch.” This year, she will dance the part of “Snowflake.”
Informed, assured and in control: the life-changing event that took the mystery out of ITP.
Not too different than most committed students, Joe Winter found college life at North Dakota State University bustling with full-time obligations - classes, assignments, an internship and extra-curricular activities, so fatigue seemed par for the course - until this course of fatigue seemed to intensify over several months to include dozing in class and the need for multiple energy drinks to make it through the day. “I knew something wasn’t right, but I really didn’t feel like anything was wrong because I was 21 and really active and thought I was just going through a funk,” said Joe Winter. At the same time, Joe noticed bruises appearing on his legs, arms and back, but still brushed it aside thinking nothing could possibly be wrong. It wasn’t until experiencing a bout of dizziness while exercising at the Wellness Center on campus that he even began to consider that something may truly be amiss and that it may be time to seek medical advice.
A shocking diagnosis and last-ditch treatment effort harvests one of life’s greatest blessings.
Like many other people, it was never fully understood how or why I ended up with ITP. I was on the city bus one day with my husband, heading home from work. I felt a sudden jolt of panic, but I couldn't pinpoint why or what was wrong with me. We got off the bus a few stops early to get some fresh air and walk the rest of the way home. Another wave of panic set in and all I could repeat to him was, "Something is wrong, something is wrong." We went to the emergency room and they performed a few tests – EKG, flu test – and they gave me some fluids intravenously to hydrate me. They did not do a complete CBC and so they missed what was happening. In fairness, I had no clues to give them. I had told them that I was having a horrific menstrual cycle that would not stop bleeding. It was the heaviest that I had ever experienced, but I had very abnormal cycles. As I did, they chalked it up to my reproductive medical problems. They gave me pamphlets on heavy menstrual cycles and sent me on my way.
A therapeutic approach to healing
On the night of my 40th birthday, I got a call I’ll never forget: my doctor was telling me to get to a hospital because I had “no platelets”. I had no idea what that meant!
I would have googled “platelets” but it was 1990. There was no google and no PDSA. I was on a scary journey without a guide or a map. That journey was to last 16 years.
During that time I tried every medical treatment available — including chemotherapy and splenectomy. None of these worked. Prednisone helped but the side effects were awful. I searched for alternatives in vain.
Then one day at a health food store, a book on Macrobiotics caught my eye. Miraculously, it mentioned ITP! It was just one paragraph, but it convinced me. From that night on I ate only veggies, rice and beans. Prednisone side effects lessened. Within weeks I was completely free of ITP. Things continued this way for several years… until I became anemic.
After 13 years of critical challenges and refractory ITP, an effective therapy liberates and renews hope for this young warrior princess.
My name is Ayla Charness and I have fought ITP for almost 14 years. I was diagnosed at 3-1/2, barely in pre-school, and am now 17 and just starting my Senior year of high school. When I was diagnosed my parents were told the same thing most families of kids with ITP are told, “give it 6-12 months and it should go away”. Of course, as my parents explain it, we should have known we were in for a bumpy road, five days in to the diagnosis. That is when I was admitted to the hospital for an 8-day stay because of bleeding they could not get to stop and low platelets that they could not get to come up at all. And to say it has been a bumpy road may be an understatement. That being said, I am so happy to share my story. I want to share both the good and the bad of my journey so hopefully people can understand that with the right amount of love, support and resiliency, you can succeed in spite of the challenges.
A seemingly normal day unveils irregular bruising and is the beginning of the journey for this young, active woman.
In September of 2005 I was diagnosed with ITP, immune thrombocytopenia. It was what I thought was a normal day playing a sport that I loved, Volleyball, and I noticed abnormal bruising that would not go away. The bruising lasted for nearly almost a month and I knew something was not right. ITP is an autoimmune disease in which your body makes antibodies against platelets. In autoimmune diseases, the body mounts an immune attack toward one or more seemingly normal organ systems. In ITP, platelets are the target. For anyone who is unsure, a healthy platelet count ranges from 150,000-400,000 platelets per microliter. My lowest platelet count throughout my journey before my splenectomy was 4,000.
Living with ITP uncovers an adolescent’s hidden human strength and gratitude.
I was diagnosed with immune thrombocytopenia (ITP) in February 2015. Throughout this continuing period of medical care, I have received so much support from teachers, family and friends. I am humbled by the love they show me, and I realize how fortunate I am to be surrounded by such caring people. Going frequently to the clinical care center at Texas Children’s Hospital and seeing children younger than me diagnosed with cancer and other autoimmune disorders have helped me to appreciate just how fragile life can be. It has helped me to keep a positive perspective with my own health issues and not let this autoimmune disorder interfere with living my life to the fullest. I see more clearly the preciousness of life and try to share my positive attitude with my friends and family. I have grown through this personal challenge by being helpful, loving, and kind whenever I can, and try to always have a smile on my face when times get rough. I trust that whatever comes my way in the future, my faith, family, friends and community will help me to remain strong, positive and loving to meet these challenges.
An unusual nosebleed and extreme fatigue on a flight home prompt this ITP Warrior to seek medical care.
My name is Manminder Singh Combow, but everyone calls me Mindy, lucky me, whereas I am a boy. I have been a resident of Houston, Texas for the past 10 years, but was born in Vancouver, British Columbia, Canada. As a young child, my family and I moved to Canada’s east coast to Halifax, Nova Scotia, which I consider my hometown. I am a dual citizen of both Canada (by birth) and the United States (naturalization, Jan 2017) but, as most Canadians are, especially proud to be a Canuck, not to mention, a Maritimer through and through. I enjoy playing/watching hockey, basketball, soccer, and, of course, cheering on the New England Patriots to a big win! I have a Bachelor of Commerce (BComm) degree and a Master of Business Administration (MBA) degree, both from Dalhousie University in Halifax, Nova Scotia. I have worked in the banking and financial services industry for over 20 years. In my previous life in Halifax, I was a Financial Advisor/Planner and grew a book of business of high net worth clients. After completing my MBA, I sold my client portfolio and moved to Toronto, Ontario. I worked in the financial/banking services industry there for 9 years with 2 large international banks in the downtown financial district (Bay Street). I was transferred to the US in 2007 by Scotiabank and recently accepted a new position with BB&T – Capital Markets, as Senior Vice President – Capital Markets - Corporate Banking..
A startling diagnosis baffles this grown woman who feels completely fine.
As a fatherless kid I was often teased for having "bad blood" and in my 60's that became true. Initially, I thought the horde of freckles creeping up my feet and legs was just another old-age thing, but when they appeared where the sun don't shine, I decided to seek a medical opinion. Along with the zillions of freckles (purpura), I had more bruises than normal but being a klutz, I gave them no thought. Upon hearing the doctors and nurses discuss calling for an ambulance, I said a prayer for that poor soul. Then they came into my room and identified me as having a horrendously long named, life threatening bleeding disorder where my immune system destroyed my platelets faster than they could be made. Next, they explained that those freckles were pools of blood leaking from my veins...What?! They actually plotted a safe route to the hospital, ordered me to not go home, not buy a magazine, not stop for lunch, not hit a pothole, not get in an accident, and try not to sneeze! Yet I felt fine.
A little girl’s courage fuels the momentum of a BIG movement for ITP
“I’m Ruby and I have ITP, so I don’t do bounce houses.” A profound statement from a 3-year-old little girl from Lincoln, Nebraska well-versed in low platelet safety guidelines. Diagnosed at only 15 months of age, little Ruby has never set foot in the bouncing habitat headlining at most “kid-friendly” parties and events, but a bounce house isn’t exactly “kid-friendly” when your platelet count is below 20.
“Ruby is a rollercoaster,” said her mom, Jill. Her counts fluctuate from highs to lows – at times dropping rapidly to dangerous levels. As athletes, Ruby’s parents Matt and Jill recognize the power of positive thinking. Grateful for the highs and that IVIG brings her counts back up, Jill reflected, “nothing is as dark as the day I sat in the doctor’s office and thought my daughter had cancer.” Inspired by the actions of a colleague who shared with Matt his personal journey with IVIG treatments to help them better understand Ruby’s journey, the couple developed a deeper respect for raising public awareness, the significance of support and the duty pay it forward.
A tenacious, young warrior right-sides his world after a shocking diagnosis turned it upside down.
My diagnosis of ITP was very shocking. It turned my life upside down. I had to learn about a disease I had never heard of before and change my lifestyle completely. I had to deal with terrible symptoms from medication. I could have just given up and taken the easy route, but I decided to use my experience to make a difference in the world.
As a high school student, I was involved in typical activities. I took AP classes, wrestled, did community service, and played video games. After my diagnosis, I had to focus on my classes and my health, but I gradually started doing more, and now I am involved with more activities than before my disease started. It has been extremely tough at times. I have struggled, but I am slowly becoming a much better person.
Recorded at ITP Conference 2017 in Phoenix, AZ, Joan talks about her unique journey with ITP... from diagnosis to remission.
Good morning everyone. My name is Christina. I am in otherwise healthy 26 year old who was diagnosed with ITP in December, 2014. I am currently a 3rd year medical student at Indiana University School of Medicine. It was during my internship two and a half years ago, when I was working as a research assistant at the University of Illinois, that I had my first exposure to hematology through personal experience. While working in the research lab in December, 2014 I had recurrent nosebleeds that lasted over 4 hours. I was admitted to Rush University Chicago hospital with the hemoglobin of 6 and 10,000 platelets. I received a platelet transfusion the same day, which further dropped my platelet counts to 6,000. The hematologist later concluded that the platelet transfusion stimulated my immune system even more, which caused a further decrease in my platelets.
John's story was recorded during ITP Conference 2017 in Phoenix, AZ. He shares his advice about the importance of becoming an ITP Warrior, taking good care of yourself, and taking advantage of the wealth of information and resources that the ITP community has to offer.
An ITP diagnosis inspires a young, competitive gymnast to turn a setback into significance
Any athlete will attest to the main reasons to engage in competition – the desire to win, the opportunity to improve personal performance, and the chance to step up individual efforts for a shot at higher levels of achievement. What happens then, when one’s drive to compete is derailed by the diagnosis of immune thrombocytopenia? For eleven-year-old Katie, of Georgia, it meant employing those components and engaging her grit to beat ITP.
You never know with ITP. I tell our daughter, Mia (17, dx at age 12) that ITP teaches us to live with ambiguity, to weigh the pros and cons and make the best choice we can when it's not always clear what is the best path forward.
Over the past 5+ years, Mia's tried just about every drug there is for ITP (ivig, anti-d, rituxan (4 rounds on 3 occasions), NPlate, promacta and, of course, the dreaded prednisone along the way.) Eventually, all the drugs have stopped working and, when they do, Mia's numbers always fall below 10. We are blessed that she's not a bleeder. Our doctors have never hospitalized her for low platelets (except to treat) so, even when she's in single digits, she does school and life, except for sports and any obvious risks. That said, when her platelets are this low, she's beyond exhausted. She can barely haul herself through her days, sleeps a lot and is understandably sad. We have a 504 in place at school for these times.
Over the years, I have developed a very sarcastic shell that I use to for protection. Most of the time, I like to believe that kindness is my superpower, not my weakness. However, Sarcasm is my safety net. I have been diagnosed with ITP (Idiopathic Immune Thrombocytopenic Purpura), Chronic Migraines, Depression, & Anxiety. These do not by any means make me unique or special. I have learned over the years that there will always be someone who can top my list any given day of the week with a blink of an eye. These are however, invisible and incurable diseases that I will carry with me like badges sewn inside my jack lapel, that I can flash any time I need gain entry into the club. People have often said to me when the truth rises to surface, “You don’t look sick.” In the beginning, I would smile and say thanks. Now, I just smile and say with a slight laugh, “Why would I want to look sick?”
After discovering unexplained bruises on his body, I took our baby boy went to the pediatrician on Tuesday, August 23, 2016. She said he had ITP and sent us to the ER at our local hospital for blood-work. He had only 8,000 platelets. Then, we were transferred via ambulance and admitted into Yale New Haven Children's Hospital. Later than night, he was down to 1,000 platelets and was given his 1st IVIG infusion.
Thirteen years ago I was diagnosed with a blood platelet disorder called ITP -- idiopathic thrombocytopenic purpura. I know, right? What? It means that my body is at war with itself. My immune system attacks itself, perfectly good platelets, and destroys them.
I'm a Snoopy fan and found a tee-shirt at the time with the quote, "It's a brand new day- the sun is shining- and I'm alive! I still have that tee-shirt. It was a tough battle but I survived. I won. Almost. Not every battle is meant to be overcome. Sometimes, your enemy becomes your companion and you have to learn to deal. The two of you will be hanging out together for awhile.
I am a 17-year-old girl living with ITP. I was diagnosed with this when I was in sixth grade. I started to notice bruises all over my legs, but at the time I was taking Tae Kwon Do, so I linked it to that. I finally ended up going to the doctor when my legs were covered in petechiae. My pediatrician sent me to a hematologist and they had diagnosed me with ITP a few weeks later.
I didn't really understand what the disease was all about back then, all I knew was that I was upset about quitting the sports I had been playing.
I just wanted to share my story to give hope to others struggling with this awful disorder... especially the parents who have young children struggling. I was diagnosed around my 10 th birthday following many tests and some serious worry that I had leukaemia. My levels were extremely low, under 10, and I was always covered in bruises. This was 25 years ago and there weren't outlets like this to search for support, so my parents did the best they could with the information they got from our small town doctor.
My dad, age 94, has five years of blood tests showing a steady decline in his blood platelets from a high of 87,000 to a low of 37,000. He was scheduled for a heart scope procedure in late June of 2014, with hopes of having a stent put in, clearing the way for a TVAR "stent/valve" put in to replace the failing valve in his heart. When he arrived for the procedure, they took a blood test and told him they could not proceed because of his low blood platelet count. They basically told him to go home and prepare to die. No suggestions, no help, no nothing...
Almost three years went by with him being a normal healthy baby boy. Bringing a smile to just about anyone who met him!
Under one roof consisted of 8 people!! Brother Cody, 17; Cousin Ashley, 14, brother Wyatt, 5; sister Nadene, 3; Zane 2 years 11 months; Mimi (Grandma) and Mom and Dad, we had a house full!
Due to chronic ear infections it was finally decided to have tubes put in his ears on 8/25/2009. 12/1/2009, Zane had to have some dental surgery
done, four caps on the top front and two cavities on the bottom.
Hi, My name is Neha. I am 25 years old, live in a small town named Hamirpur in H.P. India, and I am an ITP patient. I am not sure whether it is by birth or not but I got a major attack in 2010 during my studies. That was a major setback in my life. There was so much blood around me, not even a single opening of my body was left without blood. I was hospitalized and was referred to a big hospital, PGI, best hospital in northern India. There I was diagnosed with ITP. The doctor gave me the option of IVIg injection but I rejected that option due to my exams coming soon. So they put me on various steroids. After 6 or 7 months, I was back to my normal life. I was so glad that now I was free from that disease.
"I am the mother of 2 young children, so life is and was pretty busy and non-stop go, go, go. We did not live near our extended family, therefore, we did not have the support of family to pick up the slack when I or my husband felt ill..."
Hi, my name is Jaymee-Lee and I am a 14-year-old girl from Australia. It all started for me when I noticed quite a few huge bruises on my arms, back and legs and I didn’t know what they were from. I also had a red dot rash on different parts of my body that we thought was a reaction from our washing powder (later we realised it was purpura). My mum decided to take me to the doctor to get a blood test as she had ITP when she was younger but we didn’t think too much of it since ITP isn’t known to be genetic.
I am 31 years old and I live in Salinas, CA. I found out I had ITP when I was two months pregnant. I had never had blood work done prior to my pregnancy. I had to have routine blood work. My doctor called me immediately after she received my results because my platelets were under 30,000, and they needed to find the cause. I was sent to have blood work to test me for lupus, hepatitis C, etc., and the results were always negative.
I am a mother with a 20-year-old daughter who has been suffering with chronic ITP since she was two years old. She is such a great kid for us. She is blessed with intelligence in her academics and drawing, and she is a scholarship holder since she was in primary class until university. During her school and university life, she is never allowed to join any sports. Now she is in her freshman year at university. She is a very active girl though she is carrying ITP with her.
Hi. This story is regarding my father who is currently 64 years old. He was diagnosed with Coronary Artery Disease with acute anterolateral MI (myocardial infarction) in December 2011. His platelet count when admitted was 130,000. While doing percutaneous transluminal coronary angioplasty (PTCA) to the left anterior descending artery (LAD); heparin 5,000 IU was given by IV followed by stent placement.
Hi everyone. I am a 51-year-old female who was diagnosed with ITP when I was 21. Back then, everyone was afraid to hug or kiss me as they thought it was related to HIV. I didn't know much about the disease either so I researched it. I must say, that over the years I have been extremely lucky my platelets never went below 80,000 even when I was pregnant with both of my boys.
My name is Sarah. I am 25 years old. It has been about a month since I found out that I have ITP. I went to the doctor in the beginning of June because my period was extremely heavy and it scared me. I found a clinic that had a sliding scale and I saw the Ob-Gyn doctor. I told her about my heavy bleeding and that I had bruises that I didn't remember getting. She had me get a CBC. I was a nervous wreck for the next three days. The clinic called me and told me go to the ER straight away.
Hi. My name is Simon. I am a 26-yr-old male dairy farmer from New Zealand, usually fit and healthy. I have recently been diagnosed with ITP. It came on suddenly-- one day I started peeing blood and had kidney pains so I booked a doctor’s appointment for the next day. When that came around I also had bruises and blood spots all over my body including my mouth. The doctor sent me straight to the hospital saying I had low platelets. It turns out he was right.
I have had chronic ITP since the 1960s (I am 56 now) and really not had a lot of treatment. My mother and father took me to the doctors weekly from the time I was about 11 until high school in Baltimore, Md. After diagnosis I was stuck in the library during recess and told not to get in any accidents, typical treatment. I was not treated until the 1980s. In the 80s I was living in Dallas, TX and put on prednisone. It worked but I stopped because of side effects, so it was mostly watch and wait. I lived in the UK for many years and never saw a hematologist.
My son was admitted to the hospital on January 26, 2012. He was admitted because he had bruises on his legs, hand, and back. He also had bleeding mucosa in his mouth. The doctor diagnosed him as an ITP patient. They gave him IVIg on January 27th and his platelet count increased from 1,000 to 9,000. But the next day his platelet count decreased to 1,000 again.
The event, held on March 27, was at the ribbon cutting for the American Girl store in Denver, CO where Ayla spoke to the 40-50 member staff of the 8th American Girl store.