Jason's interview
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How did all start?
I went to my doctor about reoccurring nosebleeds.. - was misdiagnosed with micro abrasions.. Then, starting having issues with my eyelashes turning towards my eye and irritating them. After eyelash removal.. eye doctor then noticed a Symblepharon in my right eye.
Do you already have a diagnosis? How long did it take you to get it?
We kind of diagnosed the disease then and there.. as we included my mouth lesions, nasal problems and the conjunctiva scarring.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Prednisone to slow down the spread of the scarring and blisters.
What has been the most useful thing for you so far?
Not panicking.. its hard to find doctors who know about this disease.. Im getting kind of shuffled around trying to find help and treatment.. but I know I will find the right people and will soon get some relief..
What have been your biggest difficulties?
The pain and discomfort is annoying... the blurred vision is a tad bit scary.. but the hyperglycemic episodes due to the Prednisone and my diabetes have been super rough.
How has your social and family environment reacted? Have your social or family relationships changed?
No changes in relationships - everyone is been very kind. even though most still dont understand what's happening.
What things have you stopped doing?
Stop doing? nothing really.. some changes in diet - I find im super tired or exhausted so I dont get out as much as before.. but havent stopped trying.
What do you think about the future?
I dont know what to think.. I'm in the dark as much as most people with this autoimmune disease.. Im just rolling with the punches.. :D
So far, which years have been the best years in your life? What have you done during them?
every years a good year. :D
What would you like to do if you didn’t have your condition?
Eat some cheesecake.
If you had to describe your life in a sentence, what would it be?
Friedrich Nietzsche said: To live is to suffer, to survive is to find some meaning in the suffering.
Finally, what advice would you give to a person in a similar situation?
You too are now One in a Million! This makes it your duty to stand out and be seen and heard. Don't wait for help.. seek it out and you'll be fine.
