mid dermal elastolysis

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I have just been diagnosed with Mid dermal elastolysis, I have it on my arms top of legs under arms ect.

I have been told that it is a very rare disorder and that it is very hard to treat, I am 72 yrs old.

Has any one on this list that has had this?

Shirley

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  • Posted

    Dear Shirley with Mid Dermal Elastolysis,

    I was diagnosed with this condition 2 years ago. I am nearly 40 years old. I would like to share my experience (and frustrations!) with you and others with this condition.

    stay well, jennifer

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  • Posted

    I actually caught a virus that caused fine crêpe paper-like wrinkles to appear on the top of my hand, and then the rest of my body, with these wrinkles looking very much like those found in mid-dermal elastolysis.

    As the virus I caught unfortunately spread to friends and family, the same fine wrinkles appeared in these other people also (after around 12 months or so with the viral infection).

    This virus (which is probably an enterovirus), also caused a number of other chronic symptoms, including:

    Chronic sore throat that never fully heals (but many don’t get this).

    Constantly congested nose/sinuses/post nasal drip with unusually thick mucus.

    Depression and low mood.

    Generalized anxiety disorder – anxiety which can get very extreme.

    Powerful psychological changes and cognition disruptions.

    Loss of desires and sense of pleasure (anhedonia); loss of libido.

    Social withdrawal – escaping social activities more and more.

    Loss of drive and motivation (athymhormia).

    Memory problems, both short-term and long-term recall.

    Unusual sleepiness and a tendency to fall asleep more.

    Chronic fatigue – notable loss of energy.

    Stomach aches and pains, with stomach / bowel rumbling.

    Pins and needles (paresthesias), especially in the legs.

    Receding gums — a sudden onset of periodontitis, with brown plaque appearing on teeth.

    Thus if you have several of the above symptoms in addition to mid-dermal elastolysis-like skin wrinkling, consider that you may have caught this virus.

    Details of this virus can be found on the website I set up to describe it here:

    chronicsorethroat.wordpress.com/

    Specific details about the fine crêpe paper-like wrinkles produced by this virus can be found here:

    chronicsorethroat.wordpress.com/site-map/mid-dermal-elastolysis-skin-wrinkling/

    I hope this helps.

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  • Posted

    Was also recently diagnosed with type 3 mid-dermal elastolysis. I have the lacy pink rash on upper back and upper chest that goes with type 3, but it is more apparent late at night and tends to fade out during the day. The biopsies (4 of them) shoed the loss of elastin fibers in the mid dermis. I am 68 and am also diagnosed with limited systemic sclerosis (scleroderma without skin thickening except on my puffy fingers). It's the anticentromere type of scleroderma. When there is no, or minimal skin thickening in scleroderma, it's also referred to as "sine." I also have thyroiditis with hypothyroidism (probable Hashimoto's thyroiditis), and possible Sjogren's Syndrome (very dry mucous membranes). I have read that mid-dermal elastolysis can go along with autoimmune disease. My ANA runs as high as 1:2560. My sed rate has tested as high as 74. My complement and c-reactive protein are also often elevated. I also have the anticardiolipin antibodies. But the

    lupus band test, anti ds-DNA and anti SM are all negative. And I also have IgG kappa monoclonal gammopathy. My heart is affected, with left ventricular diastolic dysfunction and exercise-induced pulmonary venous hypertension secondary to the diastolic dysfunction. I also have chronic venous stasis, with attacks of exercise-induced vasculitis.

    I am wondering how many people with mid-dermal elastolysis also have sine scleroderma and don't know it because it's so hard to diagnose when there's no skin thickening. Common problems in sclero include gastric reflux, and Raynaud's, alternating constipation and diarrhea, and sometimes huffing or puffing with only mild exertion because of heart and lung effects.

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  • Posted

    PS, the scleroderma has also brought with it great fatigue, and paresthesias and burning pain in both hands and feet. No one knows what triggers scleroderma, but some have suggested that human parvovirus might, as well as other exposures to things like silicon, agricultural chemicals and even peroxide. I used benzoil peroxide acne lotions for years before I became allergic to it. Now I've read a study saying that exposure to peroxide can cause lab animals to develop the anticentromere antibodies, which are one of the antibodies specific to scleroderma.
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  • Posted

    Hi Shirley,

    I have just been diagnosed with the same condition. I am 47 years old and have it is over quite an extensive area, upper arms, back, trunk and upper thighs. I'm very active and look after myself so it's a bit of a blow.... I have been treated for an underactive thyroid for many years but been told by both dermatologist and endocrinologist there is no link between the two.

    Have you found anything that has helped you? Been told by dermatologist there are no cures but after spending many hours on the internet it has been mentioned that some topical Tretinoin cream has shown to reduce the wrinkles. Is this something you have tried? 

    Would be very interested in hearing from anyone about this rare condition and if anyone has any tips.

    Penny

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    • Posted

      Hi Penny I am pleased to say that I haven'tnoticed my mid dermal getting any worse in fact I can't really tell the differance between age lines (79)and the wrinkling from the mid dermal sometimes I do get little red spots on my arms that seem to have a small blister on them but I just use some cream that heals it quite quickly. It hasn;t really caused me any problems. I do somrtimes get a Motley look on the inside of my Arms as if I have had them in front of a fire, which I was told was the mid dermal but it comes and goes so doesn;t bother me.

      Try not to worry too much I think it sounds a lot worse than it is.

      But I can understand your concerns as you are much younger than me. 

      Good Luck 

      Shirley

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