The disease is a rare autoimmune disease and a complication of Grave's disease which I was diagnosed with when I was 26. I chose to have my Thyroid removed and take replacement hormones.
Unfortunately autoimmune diseases can never be cured, only managed. In my particular case, the antibodies that I carry in my bone marrow turned back on and launched an attack against my brain. It has had devastating results on my body and as I write this, we have still been unable to find a treatment protocol to control it.
I do not know what my long term prognosis will be. I am currently utilizing high dose steroids, Cellcept and IVIG transfusions to try to gain control of the disease but it is a slow process which has so far not improved anything.
Between hospital stays and after utilizing all of my FMLA, I continued to try to work on a part time basis. Unfortunately, after a recent hospital stay at the beginning of January, I was contacted by my company and told that I was terminated because I was a liability. Furthermore, my health insurance was canceled.
Part of the lesson of this journey has been to learn that I need to ask for and accept help from others. The prescription costs are very high as is the cost of COBRA. It's an expensive disease. The last round of 5 IVIG infusions alone cost $90,000. I have started the process of applying for disability but it unfortunately not be a quick process. Your help will help me cover the cost in the meantime.
Thank you for taking the time to read my story. I deeply appreciate any donations that are made.
DonationsSee top donations
- George Michaels
- Tracy Haggerty-Noviski
- Megan Faloni
- Ashley Dieck
- Laura Zuloaga
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more