I've been searching and searching online for a place for answers and support after being diagnosed with MF. I'm having a hard time finding a place that's active... hopefully this will be it. After years of dealing with the rash, the swelling, the cracking, I was referred to the Mayo Clinic. They took one look at me and decided it was contact dermatitis. They wanted to wrap me like a mummy in wet dressings and told me to avoid allergens. PLEASE! avoiding potential allergens was soooo 2 years ago! I was furious/ frustrated, felt like I was at the end of my rope. This was THE MAYO CLINIC!! If they weren't going to dig deeper and find what was really wrong with me, who would? I cried, did some proverbial kicking and screaming. And was encouraged to go back for more testing. After 3 trips from Kentucky to The Mayo Clinic in Rochester, MN, and leaving enough tissue and blood samples to clone myself, my diagnosis was indeed determined, CTCL. Ironically, one of the leading CTCL clinics is less than 100 miles away from me at Vanderbilt. I met wtih doctors there earlier this month and my diagnosis was confirmed. I go in on Monday to start photopheresis. The last few months have been a blur. I have been desperately searching online for connections and support from others who have been where I am and where I'm going. I really hope to make some of those connections through here. Don't let life pass you by... unless of course it's behind you in line at the grocery with only one item. That's just being nice.
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