RARE disease caused permanent damage d/t dismissed by Drs for 7 yrs

Posted by skyfaye02 @skyfaye02, Oct 9 7:48pm

I'm 24 years old, been suffering with chronic autoimmune neutropenia (low WBC) since I was 17. I have had numerous hospital admissions, as mild common infections would overwhelm my body to the point my skin would start ulcerating and wounds opening up. Up until last summer (2023), countless doctors and specialists I went to for answers simply said "You just have a virus, you'll feel better in a couple weeks." This went on for 7 years. I had numerous hospital admissions and ER visits.
My primary laughed at me when I asked about a possible autoimmune disease. So then I was sent to Infectious disease, then oncology/hematology, then peds rhuematology, then GI, endocrinology, and then back to hematology.
All it took was ONE doctor to actually look at my entire history. After being referred to the Huntsman Cancer Institute, I have finally been diagnosed with Primary Chronic Autoimmune Neutropenia.
Unfortunately, this disease is so rare in adults that the prognosis is unclear, treatments are experimental.
The worst part is, all of the infections and stress on my body has caused permanent damage to my autonomic nervous system, urinary system, my skin, and my reproductive system. All because not one Dr would listen to me. And I believed everyone telling me "you're not sick", so I went to nursing school in the middle of the pandemic!
I'm an RN now, and I love my job, although I wish I was healthy enough to work full time. But I have so much anger that my body will never be the same, that I was slowly killing myself by trusting what my doctors told me, that I "wasn't sick". I'm lucky that I've survived up until now.

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I can totally sympathize with you!! I have been suffering (on and off) with a muscle spasm in my back and have never had an answer as to what is causing it and what to do about it. I have seen many different specialists and no answer. I am not able to do anything when it happens without stabbing pain. I've been given many prescriptions for pain pills, PT, X-rays, CT scans and MRI and nothing shows up. It is ruining my life!

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