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These articles may contain some incorrect information about ITP; please see www.pdsa.org/about-itp.html for correct information.

Listed here are a variety of stories from real people about their various experiences with ITP. If you have an interesting or unusual story, please register or log-in to the pdsa.org web site and send it to us and we will consider posting it here. (We will not post your name or e-mail address unless you tell us to do so).

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...

Zane's Story

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.

Read more...

 

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..."

Read the Full Story...

 

 

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.

There once was a little girl who loved to play with her friends. She also loved to rough-play with her father. That sweet little girl grew quickly and now is a beautiful young lady. One gloomy day, her life changed quickly.
Hello, my name is Alfonso Perillo. I am 40 years old, from Naples, Italy. Please excuse any grammar mistakes—English is my second language! Forgive me for beginning my story negatively, but I’d rather start with the bad and end with the good. My story is a great example of how even after 18 years of good health, the symptoms of ITP can still come back and affect your life.
My daughter received treatment for a sinus infection on Friday. By Saturday evening, she had red spots and bruises on her legs. She plays soccer and had a game earlier that day, so we assumed that was what had caused such bruising.

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!

My 8th Grade year (2000) I was a Normal Active Tween. I had some Family in town and my Aunt Asked my Mother if she was beating me. My Aunt Stop Counting Bruise's at around 50 or So. My Mother then proceeded to take me to my Normal doctor on that Friday.
I have been living with ITP for the past 18 years. I was diagnosed at the beginning of my 6th pregnancy and after doing some chasing about it was previously noted in my 5th pregnancy but the particular doctor who delivered our daughter did not notify me about it.
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. 

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’.

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.

(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.