- CASE FILE
23 yrs old. Rare & fatal blood disease. Doctors cannot find cause. Developed Arterial blood clot. Severe weakness & fatigue. Rash.
ABOUT THIS CASE FILE
I developed a stomach rash in December 2017. Rash spread rapidly across entire body. GI issues began. I was treated for scabies 3 times by dermatologist. I have had 4 skin biopsies, all of wish were inconclusive. I was put on prednisone for about a year. During that time I was going through the medical workup. We assume the test results might be skewed because of this. I had increased eosinophil levels, all the other testing was coming back normal. I was "diagnosed" (by ruling out other diseases) with Idiopathic Hypereosinophilic syndrome. This was after seeing over 11 specialists in 7 months. We tried various medications. Dapsone caused me to develop methemoglobinemia, my O2 stat was in the 50's. I was on cyclosporine for ~2 months and Hydroxyurea (chemo) for 6 months. I was then put on a clinical trial for mepolizumab, we discovered I am allergic to this medication. It caused a lupus induced reaction. In November of 2018, I was experiencing left leg pain. I went to the ER and 4 days later I was having a fem-pop bypass to save my leg. I had developed a 2 inch blood clot in my popliteal artery. The doctors suspect the clot was due to my eosinophils attacking my vessels when my eos level was around 4,000. We are concerned with my diagnosis because of the possibility of skewed test results, the complications of the blood clot, and the fact that they can't find the cause. My pulmonologist has always said He believes I have vasculitis- due to having Kawasaki disease at age 5, the blood clot, and having re-occuring bronchitis. I currently have 2 doctors writing an article about me for medical journals. I have been told by doctors that I am "a mystery", "a puzzlement", "a unique case", "not normal", "[my] case is so interesting...and you never want a doctor to tell you that they think you are interesting". I have debilitating weakness and fatigue. Some days I cannot walk to the kitchen or upstairs without crying. It is extremely painful. The rash develops on random areas and dissolves on its on. I have tried topical creams as well as several oral pills for the rash with no luck.
All medications I have been on since being diagnosed have not helped. I had to drop to part-time student status and quit my job when I got sick. I have not felt "normal" since Dec 2017. My hope is to have clarity in my diagnosis or to have more testing done to verify my diagnosis because there are many diseases that present with high eosinophils and rash. I don't think there is any harm in searching for another diagnosis or looking for the cause of my disease.
I just want my life back.