Mid-dermal elastolysis (MDE): What treatment did you get?
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?
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Hi, I was just diagnosed with this as well and am doing extensive research to understand disease progression and identify potential treatments. I was hoping to connect with others who have been diagnosed so we can collect some information and see if anything has proven effective.
Welcome to the Skin Health group on Connect. Mid-dermal elastolysis (MDE) is indeed a rare disorder, manifested by fine wrinkling of the skin and mid-dermal loss of elastic fibers.
I was digging through Connect’s discussions, trying to find members who may have discussed this condition, but the only activity seems to be on this thread. I want to assure you that we will keep you connected and introduce you to any new members who may be looking for this topic. In the meantime, I hope @jstreed and @rebd3 will return to share their experiences.
I did find this journal article about the clinical features and differential diagnoses of MDE, which you may wish to view:
– Mid-dermal elastolysis: A female-centric disease; case report and updated review of the literature: http://www.sciencedirect.com/science/article/pii/S2352647515000416
@ocean85, do you spend a lot of time outdoors? Where did you first notice the symptoms? May I ask what your doctor has suggested in terms of treatment and progression? We look forward to getting to know you.
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?
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
Hey can you connect with me? Have this all over. Literally worsening rapidly. I’m terrified it’s worse everyday .
Welcome @fiercebully9. You may have noticed that I removed your personal phone number. Mayo Clinic Connect is a public forum and it is not advised to share contact information. However, by posting here you can get the input of other members like @millie10 @ocean85 @evilili @rebd3.
What treatments have been suggested for you?