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.
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).
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 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.
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.
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.
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 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.
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..
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.
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.
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.
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.
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.
Recorded at ITP Conference 2017 in Phoenix, AZ, Joan talks about her unique journey with ITP... from diagnosis to remission.
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.
When I was 52 years old, I woke up one night in late October, 2000 with blood in my mouth. Turns out it was a very small place on an upper gum which just would not stop bleeding. It was not profuse...just a trickle which I could not get stopped for almost 2 hours! I tried everything including an ice pack and finally got it stopped. The next day I could not get to the doctor's office. The third day, right before lunch, I noticed blood in my mouth again and two very dark elliptical bruises under my triceps. I thought the bruises were caused by my having to lie on the boat dock to cover my jet ski. Anyway, I left work immediately and went to see my regular family doctor!
Like many of you reading this web site, I have ITP. More precisely, I had ITP because at last count my platelets were holding at 300,000 without any conventional treatment intervention. I work. I dance. I ski. This is what we dream about, having enough platelets and energy to have a life. It is certainly what I dreamed about when I was bald from a dose of vincristine and too fatigued to walk up stairs or had a mouth full of blisters and legs I called ‘red dot specials’.
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.
(WARNING - This story is rated R due to graphical descriptions. Most people with ITP do not experience symptoms this severe. ed.)
Well my name is Bill and I had a little headache so I decided to go get a few aspirins at clinic. At a military clinic, they look ya over and take a little blood first. I was late for my class and it was taking them a long time to get my pills. Then I heard all these ambulances coming in and people rushing all over the place.
I have not been more scared in my whole life than that cold day of winter in 1994. It was the time when I was going from Tuscaloosa to Birmingham, in an ambulance with Yadhi on her eight month of pregnancy. That day ITP became a top priority in my research. I was on a sabbatical leave from my university in Mexico were I was involved in Chemical Research, far from any true clinical relevance. I arrived as a visiting scholar to the University of Alabama; to which I am grateful now, for the opportunity to learn a great deal about ITP, Cancer and other inflammatory diseases.
Never did I imagine at 28 years old – that the word “PLATELET” would become so important to me. My story with ITP began on Tuesday, January 8th, 2002 – a day I will never forget.
On January 7th, 2002, I noticed some rather large black & blues on my body and I didn't recall bumping into anything. I also noticed what appeared to be some sort of rash on my lower legs. However, I didn’t worry too much about it -- other than thinking that maybe I needed more Iron or some other kind of vitamin in my diet (I thought maybe I was anemic).
I had ITP. I am now healing. Am I cured, you may ask? Probably – no, make that almost definitely – as long as my body’s healing system remains healthy. Why am I telling my story now? Maybe my experience can help someone else who’s just been diagnosed with the disease – I remember the almost overwhelming helplessness and hopelessness when I first recognized the symptoms. Maybe my story will encourage caution to those who are faced with the myriad choice of treatments – my natural skepticism helped me avoid much un-necessary suffering and expense.
I have always been a very healthy person.
I’m one of those people who wildly loves the work I do. Of course, that means that I used to have trouble saying no to the great new opportunities and challenges that came my way…so I didn’t. I did much more than was genuinely healthy.
I say all this because I feel that (even though my western doctors denied a relationship) it all lead up to what happened to me in June (2003).
Nico was diagnosed with ITP on the 30th of June, 2002. He was getting increasingly bigger bruises, a few nose bleeds at night and was very irritable. ITP kept us in a state of constant fear and apprehension for intracranial haemorrhage although that never happened.
From diagnosis to treatments to recovery, read personal accounts of these children with ITP. The stories of their experiences are varied and educational.
A variety of short stories that have been submitted to PDSA over the years. Click on the "Read More" button to read them.
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.