Here at the Autoimmune Registry, we believe that sharing stories is important for bringing awareness to autoimmune diseases. The story below is from one of our registrants, Emily, who kindly allowed us to share her story:
I view myself as someone with a “go big or go home” mentality, and it seems my body adopted that same mentality with how sick I’ve been over the last few years.
I had just received a bone marrow transplant for severe aplastic anemia (an autoimmune disease where my bone marrow doesn’t produce enough blood cells). I was finally starting to function a little better and my labs were trending upwards. But one morning, I started to have extreme difficulty walking around. I would get extremely out of breath. It was actually almost funny, I could walk a few steps before collapsing. Once lying down or crouching, I would catch my breath enough to do another lunge forward. So I sort of leap-frogged my way to my doctor’s appointment that I already had scheduled that morning.
Pretty much the second my doctor saw me in the office waiting room, she had me transported to the ER in a wheelchair. Thank goodness for wheelchairs! The ER noted that I had low blood pressure and high heart rate particularly when standing (a condition called orthostatic hypotension). What scared me the most was that they also noted I had very low red blood cells, and they thought the sudden drop in blood cells may have triggered the orthostatic hypotension.
I didn’t mind having to lunge around the apartment. I didn’t even mind when they said I would have to lie in bed all day, but the low blood count was scary. Doctors looked at my bone marrow, and it looked healthy. They checked for various blood illnesses but found nothing, so it was determined that I had another autoimmune disorder called warm autoimmune hemolytic anemia (wAIHA), which meant that although my body was making blood cells, my immune system was destroying them! To treat this, I was taking 100mg of prednisone daily for months. After 18 days of being in bed full-time, I finally recovered from the orthostatic hypotension and could walk again (although dealing with high-dose steroids is literally a whole other story).
I see other people’s diagnosis stories, and I am partly thankful that mine was so sudden and severe that doctors had to pay attention. I was in-patient for nearly a month. Every day, a doctor would see me. Since then, my wAIHA has not acted up, and now, 2 years later, I more or less live an almost normal, healthy life. There are so many reasons that I feel so lucky.
Everyone's diagnostic journey is different, and sharing yours might help another patient feel less alone. You can check out other patients' stories on our website. If you are interested in sharing your story, please reply to this email or make a short video here (you can also record it anonymously). Don't forget to also check out our clinical trial opportunities here.
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