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

Posted by millie10 @millie10, Jun 28 1:06pm

Hi! Today I got diagnosed with mid-dermal elastylosis. I am 31 years old and feel really scared of what I will look like in a few years.. My chest is already wrinkled and my stomach is full with bumpy rashes. It’s also spreading on my back. I went to the doctor today expecting to get treatment to get rid of the rashes, but instead I found out I have a disease with no good treatment. Meaning I will probably always look like this, and it will get worse.. I am really torn and sad. I will start treatment in a few days with Isotretionin (a medicine primarily used for acne) to try to slow it down.

Does anyone have experience with this disease? What treatment did you get?

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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@colleenyoung

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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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

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