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’.
(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).
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 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.

This DVD shares the stories of the ups and downs of 5 people living with ITP.
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