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.

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.

Redefining brave
(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.

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.

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.

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.”

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 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.

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 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. 

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.

Recorded at ITP Conference 2017 in Phoenix, AZ, Joan talks about her unique journey with ITP... from diagnosis to remission.

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?”

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 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.

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.

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"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..."

Read the Full Story...

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.  

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.

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.

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!

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.

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.

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.

A variety of short stories that have been submitted to PDSA over the years. Click on the "Read More" button to read them.