4 ms·
Wow. I actually have a lot in common with this dude. I have a very rare disease that causes autoimmune autonomic failure, which was initially blamed as "diabete
by disabled 7y ago
Wow. I actually have a lot in common with this dude. I have a very rare disease that causes autoimmune autonomic failure, which was initially blamed as "diabetes complications", due to type 1 diabetes.
I was always suspicious it was something else, as it started when I was diagnosed with type 1 diabetes at age 5. I was constantly scavenging the medical literature when I was in college.
At age 22, it got out of control and I was in and out of the hospital. I came across a journal article and I realized that there was nothing about this disease that could eliminate it as a possibility. I knew I was screwed.
My blood was sent to the only lab in the US that tests for it. It came back positive.
Now, in the past year, at age 30, after trying about 10 treatments, including in combinations, I am finally in remission.
I am back in school finishing my electrical engineering degree. I am a senior undergrad. I have a new lease on life. I never thought I would be doing this well!
EDIT: My diagnosis story is here. But, I was not doing as well as I am doing now, when I posted it: https://rareandextraordinarycom.wordpress.com/2016/05/14/first-blog-post/ https://rareandextraordinarycom.wordpress.com/2016/05/14/fir...
- dpeterson 7y agoWith immune therapy, did that help with your type 1 diabetes at all?
- disabled 7y agoNo. My body produces virtually no insulin. A C-Peptide test was performed in the past 10 years, when I was receiving immunomodulatory treatment, and showed no traceable C-Peptide in my body. Hence, my body is either producing none to extremely low levels of insulin. By the time you are diagnosed with type 1 diabetes, around 90% or so of the islet cells (insulin producing cells) are eradicated, supposedly.
- dpeterson 7y agoSorry to hear that. I was hoping for you that the new therapy you were receiving gave your pancreas time to heal too.
- disabled 7y agoThank you. It's OK. I have lived a good life with T1D and it's been the only life I've really known (diagnosed at age 5). There are people who do well with it, long term. I just am just trying to roll with all of this and not look back :-).
- jagannathtech 7y agoappreciate your positive outlook and best wishes. From someone rolling with a crippling disability.
- disabled 7y agoThank you so much! Same to you, my friend! :-)
- PierredeFermat 7y agoThat's quite inspiring. Do you mind connecting via email? (Not a media request; just to learn and exchange some ideas)
- disabled 7y agoSure. Since I cannot PM you, I will use a more private address: secretsquirrel89@protonmail.com