← Return to Mid-dermal elastolysis (MDE): What treatment did you get?

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Hi @millie10, welcome to Mayo Clinic Connect. Allow me to bring @ocean85 @evilili @rebd3 into this discussion in the hopes that they can share their experiences with mid-dermal elastolysis (MDE) and treatments. It is very distressing to be diagnosed with a condition for which there isn't yet an effective treatment. I can imagine you are reeling with emotions.

Isotretinoin (Accutane) is very effective for severe acne. I sincerely hope that it will help slow the progression of MDE. Be sure to stay protected from the sun. Do you have a good circle of support with family and friends?

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Replies to "Hi @millie10, welcome to Mayo Clinic Connect. Allow me to bring @ocean85 @evilili @rebd3 into this..."

Thank you for your answer Colleen. I know; no more sun. That is sad for me in itself. Do you know anything about different treatments? I read something about mycophenolate mofetil, which is some kind of immunosuppressive? Or do you know about any Clinic that handles cases like this? My doctor was unaware of this disease and had to read about it herself.

No not really. I don’t feel like anyone understands. It feels like most of them think that I should be glad that it wasn’t worse. But for me, in my age, it feels like a disaster