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 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.

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 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.

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.

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.

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.

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.

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.

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.

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...

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.

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 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 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.

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!

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.

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 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).

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