So here we go with my very first blog post! I'm not really sure where to start this off so I guess I'll just describe the motivation behind this and all future ramblings. I am 24 and was recently diagnosed with an autoimmune disease - cicatricial pemphigoid (also called mucous membrane pemphigoid). Being sick is scary, but sometimes it's just hilarious. I hope to document my experiences with this disorder so that other people who are suffering from the same disease have a chance of stumbling across my writings and will maybe not feel quite so alone, quite so confused, and hopefully end up a little cheerier. Additionally, the sooner this condition is diagnosed and treated, the better off you are. It's pretty rare, but I know others out there will get this in the future, or maybe already are in the beginning stages. I hope that my little blog will play some small part in helping these people to be diagnosed as soon as possible.
Of course, if you end up reading for other reasons, I welcome you as well! I hope that I provide some amusing insights into what life with an illness is like and remind you all not to sweat the small stuff.
That's all for now. Soon to come, a short description of cicatrical pemphigoid and a recap of how I got to where I am today.
Today's blog was brought to you by Jo's right eyeball! Picking up the slack of the currently useless left one, which is being squeezed shut as I type. Thank you evolution, for giving me two eyes.
Hi Jo. I came across your website after googling treatment for pemphigoid. I have it too and have had it for about 10 years (diagnosed at age 40). I see a doc in NYC who worked under Dr. Foster -- so glad that you finally got to Foster. He knows his stuff. I'm currently on dapsone and may have to switch to Methotrexate. We shall see.
ReplyDeleteAnyway -- you are not alone. Hoping your eyes are feeling better today. Take care - Barbara
Barbara, I'm so sorry I didn't see your comment sooner! Yes I was very happy to have been able to see Dr. Foster and also to hear from you! Another pemphigoid patient! Though I of course wish you didn't have to deal with the disease. Thank you for the well-wishes. I hope that your own eyes are doing well and that you don't end up having to step things up to the Methotrexate level.
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