Yes, I don’t look sick and I don’t want to.

In my 7 years (and still going on, it’s chronic) of a battle with ITP (an autoimmune disorder that attacks my platelets keeping my platelets low ALL the time making me vulnerable to infections) I had never been vocal about my illness on a larger platform. Only very few close ones know my everyday struggle with fatigue and the restricted and altered (though good in some ways) lifestyle. No regrets though till date. But today, with the coronavirus pandemic I felt the urge to pen this down in the hope to SENSITIZE the people on the importance of STAYING AT HOME. You might feel you are healthy, and your immune is quite strong that a little walk by the roadside or a stroll in the park or a visit to the worship place or a quick buy from a grocery store in your area wouldn’t attract the virus. But let me tell you, everyone in China or Italy or Canada who are quarantined and forced to stay at home might have thought the same as well. We tend to overlook the seriousness until and unless we are personally affected and the worst part is, we don’t even know that we are affected until serious symptoms show up and by then things could have gone out of our hand.

Welcoming wandering warriors into a rare and instinctively remarkable family.

In March of 2010, Canadian ITP patient and advocate, Dale Paynter became aware that he had a low platelet count after a company medical screening – a requirement of a medical surveillance program for environmental engineers – which led him to schedule a visit with his family physician.  What ensued over the next several months and years would lead him on a global journey that he could never have imagined.

 “Outside of the fact that the first time you hear of something is when you are told you have it is unsettling, it’s also what makes it so hard to talk about,” began Dale.  “There’s more of us out there than we think, more that are talking about it, and we need to spend more time and effort – for more public awareness.  You can’t be alone with this.  I can’t imagine how people lived with this before support and awareness came into being - living a whole life without having anything or any way to communicate with others who understand.  I couldn’t do it,” he said.

Finding moments of humor to relieve times of uncertainty

When I was two and a half years old, I had a swollen lymph node under my jaw, was covered in petechiae and bruises, and my platelet count was 2,000. My oncologist at the time had run numerous tests, and though he was great, he was never able to give me a diagnosis.

Fast forward to age 13, I was released from care with no answers, but I was healthy. Weird things would happen, like getting sick 10 times worse than other people, but it was what it was.

Fast forward again, this time to 2016. I was watching my favorite show, “Grey’s Anatomy,” with my best friend. On this particular episode, they were performing surgery on a man who they figured out had ITP based on how the operation was going. I looked at my friend and said, “That sounds like my childhood!” So, I investigated. I was convinced.

Nosebleeds, petechiae and the fear of never bearing children: now a distant memory.

I was diagnosed with ITP when I was 16 years old. I kept getting nose bleeds that would last for hours and bruising all over. I remember seeing red dots cover my skin, not knowing that it was petechiae. I finally went to the doctor when I had a nosebleed that lasted so long, I passed out. When I got to the doctor’s, they did what I remember them calling a “bleed time test” to time how long it took for three small pricks on my arm to stop bleeding. They went through at least 50 sheets of filters absorbing the droplets of blood as minutes passed and passed.

The longer I sat there, the more doctors and nurses would come by and check on me, and the more the staff began to whisper outside the exam room door. I remember my mother getting more and more nervous as she flipped through a magazine. I know now, looking back, that she wasn’t reading a single page. She was trying to appear calm for my sake, but she must have been so scared.

Finally, they sent me to another room and the doctor came in. He started by saying that I have symptoms of a serious problem with my blood. His exact words were, “We don’t think it’s leukemia, but we need to find out immediately what is wrong.” He then went on to explain blood platelets, which neither my mother nor I had ever heard of. He explained that normal counts were above 250,000 and my lab showed that I had 11,000. He said, “I cannot believe you are not in a coma right now.”

A fighter’s lucky break.

I was diagnosed with ITP after suffering from heavy bleeding and undergoing a second blood transfusion. Although I was unable to come off steroids without dropping down to zero, I was lucky enough that six months after my diagnosis, I was able to go on a trial drug – eltrombopag – as an outpatient with my spleen, much to the disapproval of doctors. This helped for a year and a half before I stopped responding.

I went back on steroids as another trial was opening up soon. I waited months before I could start this treatment because I needed to have platelets less than 30,000 and could not be on any more than 10mg of steroids. This was a tricky situation to balance. I ended up plummeting and was admitted into the hospital with internal bleeding. It took five days to respond to a combination of immunoglobin and steroids, and I nearly had to have an emergency splenectomy.

No apologies, just a slow and steady stride to the finish line.

I was seven years old when my parents got the news that I had ITP. I had been feeling very tired and getting unexplained bruising. The extreme tiredness worried my mom most. I was admitted to a children’s hospital where I stayed for two months. No treatment, and my body started producing platelets again. That was 1979. I got on with my life.

In 2004, at age 31, I got a stomach bug which lasted a few days. Nothing unusual there, but I couldn’t seem to shake it and over five days I just got weaker. I was admitted to the hospital on day six, where they discovered I had AIHA – auto-immune hemolytic anemia. I had a virus and my immune system started attacking both the virus and my red cells. My red cell count was at 3,000 and I needed 11 blood transfusions and huge amounts of steroids and other drugs to keep me alive. I developed acute chronic fatigue and many other horrible side effects from the steroids, but after about a year I could say I was living normally again with no lasting damage.

Then strike three. In 2017, at age 45, I started noticing bruising. I went for a blood test and got a phone call from my doctor at 9:30 that evening. I needed to go straight to the hospital. My platelets were being destroyed and my count was less than 10,000. ITP again. This time they started steroid treatment right away and my platelets came up. But over the next two months, as we started to reduce steroids, my platelets dropped again and after four months I started on eltrombopag. I am still on that a year later.

Perspective: A little boy touches the heart of a little girl with ITP in a big way.

“I’ve been through a lot,” began eighteen-year-old Talon Crist, “but every time something seems so bad, I think about how it could be so much worse – even on my lowest of days,” she continued. Talon’s journey with chronic illness began with an ITP diagnosis at age eleven and now includes other serious health issues and diagnoses, yet she sums up her journey in one word – perspective.

“When I think back to my life before I found out I had ITP, I think about having fun with friends, doing jujitsu and other sports – especially running – I loved to run. I had a ton of energy and was out doing what I wanted to do, but when I went to the emergency room for that bloody nose, my mom and I didn’t realize that it would hit me so hard,” she said. Talon recalled how they thought that ITP would be a “quick-fix thing,” that she would go home, the immune thrombocytopenia would go away, and she would get back to living her life, but what followed were daunting symptoms and horrendous treatment side-effects. “I had blood blisters in my mouth and throat, a ton of bruising – I had a really huge bruise on my hip - it looked like I was thrown down a flight of stairs and I remember people asking if my parents had done something to me and I would say no, but even walking in the halls at school was hard because being bumped with backpacks would even make me bruise, “ Talon recalled. “The weight gain from the steroids I took made me look like a chipmunk. My face was super round and chubby and I was eating all the time. Everything hurt, I was always tired, and my emotions were off the wall,” she exclaimed.

How a little ITP Warrior transformed his journey into an adventure and gave back.

There are those who live life by the proverbial phrase, “When life gives you lemons, make lemonade.” And there’s the Krueger family, who when life delivered an ITP diagnosis to seven-year-old Cayden, they redirected the course down a road to adventure. Diagnosed just a few years ago at age six, this little warrior and his family refuse to let ITP win the battle.

Cayden’s journey began on summer vacation when his mom Jennifer noticed bruising – lots of bruising - bruising in odd places. As with most little boys, Cayden loved to play, loved contact sports and more than anything, loved wrestling with his then 16-year-old brother Cody. As a mom, Jennifer chalked it up to normal roughhousing and asked the boys to curtail the intensity of their moves, but as a nurse, she continued to monitor his condition. “When bruising got to the point, where as a school nurse I felt I would be calling CPS, I knew it was time to take him to the doctor to see if something was going on,” said Jennifer.

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.

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.

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.

I’ve been wanting to share my story for some time now but have reservations because my feelings and values do not align with our culture at large. During the course of my journey I have had many people suggest or tell me that I am “wrong” or “deluded”, express concern and try to convince me to reconsider using drugs or surgery to elevate my platelet count. While I certainly understand their fear and appreciate their concern for my well-being, these interactions only served to make me feel hopelessly lost and alone. I desperately needed to be heard.

My hope is that perhaps there is someone else out there in the ITP community that feels like a “misfit” (in whatever way that may be) and my words may help them feel connected and understood. It is NOT my intent to criticize how others feel and choose to address their own health. Rather, my goal is for mutual understanding and respect. I strongly believe in the power of human connection. PDSA has been a game-changer for me in that it has put me in touch with a community of other folks who are also living with this condition that most of us have never heard of until someone told us we have it. Regardless of your platelet count, symptoms, or what living with ITP personally means to you, we share this common thread, and we’re all in this together.