Being diagnosed with ITP gave me a sort of power over it
I should know, I've been diagnosed five times
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Immune thrombocytopenia (ITP) is a rare, autoimmune blood disorder that causes the immune system to attack and destroy blood platelets, which are essential for clotting. This can be extremely dangerous, and left untreated, ITP can cause excessive bruising, persistent fatigue, and anemia, as well as severe bleeding if the patient is injured or needs surgery.
I was diagnosed with ITP in 2018, but my “origin story” isn’t especially dramatic. Four rounds of blood draws and a few hours in the hospital later, and I had an answer. Honestly, it was the fastest major diagnosis I’d ever received, so I didn’t think it was a big deal at the time.
But when a nurse came in with another bag for a transfusion, we chatted briefly about my symptoms and made small talk. She made me realize just how dire my situation was.
My dire situation
“Ms. Jordan,” she began, “a normal platelet count for an adult is between 150,000 and 450,000 platelets per microliter of blood. Doctors get concerned when it drops to 50,000. Yours, my dear, were only 530. I don’t know how you even walked into our hospital today.”
Wow, I thought. Maybe this was more serious than I’d realized. I was treated that day and didn’t have many relapses for the next couple of years, until the COVID-19 pandemic arrived. That virus sent my immune system into overdrive, triggering even more rare blood diseases. In the fall of 2020, I experienced an ITP relapse and, for the first time, developed atypical hemolytic uremic syndrome (aHUS) and thrombotic thrombocytopenic purpura (TTP). Now I had five chronic diseases, including my previous diagnoses of lupus and hypermobile Ehlers-Danlos syndrome? One was enough, that’s for sure.
aHUS makes my immune system attack my red blood cells. TTP causes my body to form thousands of tiny clots in my blood vessels and organs, which can damage or destroy them. It has affected my kidneys, liver, heart, and uterus. It also renders plasma ineffective because it’s flooded with the very proteins causing all these problems.
So many names, so many abbreviations, so many things attacking every aspect of my blood production. It’s astonishing what can happen to the human body with just a trigger. But I think getting properly diagnosed is key to managing it all.
Having a diagnosis is like knowing a demon’s name in a horror movie: Naming it gives us power over it. Within a name, there’s often a path to treatment, a network of medical professionals who can help, and, most importantly, a support system of fellow patients facing the same struggles.
Note: Bleeding Disorders News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Bleeding Disorders News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to bleeding disorders.
