This story is adapted from a letter Amanda wrote for a doctor in New York City, September 2019:

Nineteen years ago, I was diagnosed by a doctor in Syracuse with ITP. I had frequent bruising, severe bloody noses, and migraines when I was a child. I was hospitalized for some of the bloody noses and migraines.

Back in April 2008, I had an emergency C-section. I had developed preeclampsia and toxemia during my pregnancy around 20 weeks. I was taken out of work and put on bed rest. I became very sick the night of April 13, 2008, and the early morning of April 14, 2008. I was taken to the hospital in Binghamton, then transferred to Crouse Irving Hospital in Syracuse, NY. I was in a lot of pain from my organs swelling. My platelets dropped from 30,000 to 15,000 in the time it took me to get from Binghamton to Syracuse. They did not perform my C-section until 10:38 p.m., as they needed to give me platelets beforehand. My daughter was born at 1 pound, 8.5 ounces, 13 inches long. The doctor who did the procedure told my family that it was up to me to stop bleeding. Thankfully I pulled through. I recovered at the hospital for a few days and then stayed at the Ronald McDonald House in Syracuse until my daughter left the NICU to come home – about a week before her July due date.

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.

I have had ITP for 44 years now. I was first diagnosed at age 12, with a platelet count of 8,000. At the time, I was one of only five known cases in my state of Nebraska. I was hospitalized for four days with no treatment and my count came up on its own. I was told the ITP would never occur again, but I came out of remission 28 years later while staying with friends out of state. I went to the nearest emergency room and was given an IV of steroids, and then was sent home with steroids.

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.

This personal story is dedicated to my loving husband
RENE ALVIZURES
(1966-2019)

ITP Warrior for four years.

Our overwhelming journey began in April of 2015. My husband Rene noticed that he had developed bruises on his body. They were on his ankles, arms and stomach and he had not bumped into anything. He did not go to the doctor because he had to go to work and did not want to take time off. That same month in April, Rene had a car accident, so he went to the hospital’s E.R. to get checked out. He was checked for any injuries and was cleared from any injuries caused by the accident, but to our surprise, the doctors informed us that his platelets were at 3,000 and that he had ITP. We both just looked at each other and were so puzzled. “What is ITP?” we asked. The doctor explained in detail and that was when our world was turned upside down. It was a nightmare for both of us, especially for my husband who was diagnosed with a condition that many, including us, have never heard about and didn’t know existed.

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.

After 16 years, this Warrior is learning how to live with her “new normal.”

While writing this, my heart breaks for others who are suffering from ITP.

I will be turning 28 and fighting 16 years of severe ITP. It started in sixth grade, when I was 12 years old, and I thought for sure that it would be gone by now. I’ve tried more medicines, doctors, “crazy” doctors, and traveled all over the United States in desperate hope of healing from this. It’s been years and years of being raced to the ER for internal bleeding.

My platelets like to stay under 10,000. When I was 16, I got meningitis and was flown to a larger hospital because my liver was failing. I lived but suffer from severe seizures ever since then. This past December I had my second brain surgery to hopefully remove the big scar on my brain and help my seizures. My first surgery didn’t work, but I am still hoping for this second one. Brain surgery in general is high risk, but because of ITP, the risk for me was potentially fatal.

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.

A mother’s moving story, new-found mission and quest to heal.

My name is Donna and I have had ITP episodes 3 times in my life. My son Devin also has suffered with ITP and he had 5 to 6 episodes. The reason I am sending in our story now is that my son Devin passed away from Intracranial hemorrhage complications from ITP on September 20, 2019.

I feel that we have become almost desensitized to the symptoms of ITP after several occurrences, and maybe the doctors are releasing us to soon and with too low of a platelet count.

On September 1, 2019, Devin saw petechiae on his hand and a very small amount on his foot. Nowhere else. No blisters in his mouth at this time, so I told him we would watch it and go to the doctor for bloodwork on Monday, unless more symptoms occurred. The next morning, Devin had mouth blood blisters and more petechiae. We immediately went to the ER and they had him taken to Children's Hospital in St. Louis because his platelet count was 2000. This is how low his platelets have dropped with the other occurrences of ITP as well.

They kept Devin overnight that night and gave him IVIG fluids and the next day he received Rituximab IV fluids. He was released that night to go home and rest and have blood work done every other day as the Rituxan can take a few days to start really working. I was uncomfortable leaving with platelets under 10,000, but the hematologist assured us it was normal to take a few days and he should stay home from work and school.

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.”