Personal Stories

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).

 

8 Month Old Son with ITP

Last week I noticed small, unraised, red dots on my sons skin that were faint.  The next morning they were much more pronounced so I took my son into his pediatrician that morning.  His doctor called the dots petechiae and he was pretty sure that it was ITP. 
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ITP Ambassador

ITP patient Ayla Charness was chosen as the 2010 Denver Children’s Hospital Ambassador. At her first event in Denver, CO Ayla spoke about her journey with ITP.

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.
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Nico's Story

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.

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Tic-Tac-Toe

(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.

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The Purpura Shadow

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.

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H-Pylori, IvIg and Patience

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).

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Mr. Bill's Splenectomy Success

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!

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Life Changes - More Platelets

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.

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Meditation, Breathing, Diet, & More

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).

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Success Story

Joan Young 2013

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’.

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Short Stories

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

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Kid's Stories

From diagnosis to treatments to recovery, read personal accounts of these children with ITP. The stories of their experiences are varied and educational.

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