Mid dermal elastolysis

[Mfox84]

Hi all, I'm new here and am wondering if there is anybody else out there who suffers with mid-dermal elastolysis?

I'm guessing not as it is such a rare skin condition that most doctors have never even heard of, but I am finding it hard to deal with as it is spreading to my face and would love to meet somebody else who knows anything about this.

[dixieden]

Hi Mfox84,

I do not but if you ever feel like you need some emotional support or a listening ear I'd love to offer some. I have discoloured lumps and wounds on my face following some ill-advised treatments from my doctor when I was trying to treat my acne scars, which I have been told will not be going away in the near future and are likely to have permanent effects. I have PTSD but it helped me to have support from other people with visible differences, even if not exactly the same, and I just wanted to let you know that in that respect you are not alone.

In the meantime, I wish you all the very very best and hope that somebody else with mid dermal elastolysis gets in touch with you. Also to say what may be trite but which I am repeating to myself - we may not have the best skin, but we have so much worth beyond that.

[Mfox84 in reply to dixieden]

Hi dixieden, thank you for your reply.

That's awful that advice from a doctor has led to that for you!

Yes I think it would help to talk to people who are going through a similar thing, even if not the same condition.

It is hard as all my family and friends try to make me feel better by saying 'i can't see it' or 'it isn't that noticeable' etc, and I know they mean well but I know they can see it and it is noticeable and I honestly don't think they actually realise how badly it affects me and my confidence.

I have referred myself to the Red Cross for their skin camouflage, is this something you have tried?

[dixieden in reply to Mfox84]

Hi Mfox,

I know what you mean. Sometimes I want to hear people around me tell me that it's not that bad, in which case I will specifically ask them something like guys I need some affirmation today, could you tell me that it doesn't look as bad as I think?

But I don't like it when 'it isn't that noticeable' or 'there are people with skin worse than that' is code for 'you shouldn't feel the way you do' or 'stop being a downer'.

I think what I like about Changingfaces is that they don't minimise the effect that our conditions have on us and our daily life. When our appearance changed, it was a very significant part of ourselves that we lost and even months after the malpractice on my face, I still feel a lot of the time that my world has ended and I have to pick myself up and carry on.

So if you ever feel you need to rant or cry please feel free to PM me.

In the meantime, I wonder if you have tried any topical treatments for the elastolysis in the more obvious areas? I was googling and apparently retinoid creams can help control the symptoms and appearance, and are available as general skincare with brands such as Neutrogena?

I'm unfortunately not based in the UK so I won't be able to see someone regarding Skin Camouflage...I don't think there are really any makeup artists specialised in that in my part of the world. The closest we probably get is 'special effects' artists for horror movies and things like that. Please do let me know how your session goes and if you have any tips on concealing texture!!

Wishing you all the very very best,

Dixie

[DolaChangingFacesUK]

Hello Mfox84. Welcome to the Changing Faces community and thanks for sharing your post. It must be hard having such a rare condition that few people are aware of. I'm sorry I've not heard of mid-dermal elastolysis either but hope as Dixieden expressed that somebody with the condition, or at least someone who knows about it will show up. Were you given an indication of what to expect at the time of diagnosis or just told what it was and left to figure it out for yourself?

[Mfox84 in reply to DolaChangingFacesUK]

Hi Dola, thanks so much for replying.

Well after being told by various doctors that it was 'just ageing' (my body kills the elastin so I'm left with saggy, wrinkly skin), I was finally referred to a dermatologist who sent me for biopsies which confirmed it is mid-dermal elastolysis. He was the only one who had heard of it.

I went back to hospital a few weeks later where I had to stand in my underwear and had groups of 4 doctors at a time come in and look at me and prod my skin, as if I was some rare discovery.

They went away and had a meeting about it and then I was told that nobody had any idea what to do and that was that. This was 3 years ago and nobody has been in touch since and it has spread massively.

I am pregnant at the moment and have asked to see the dermatologist as I don't know what will happen to my skin with so much stretching etc, but I've heard nothing.

I have referred myself to Red Cross for their skin camouflage so I'm hoping to hear back from them and hoping it can help cover it up and give me some confidence back.

[Elo11]

Hello

I'm in the same situation as you

I am 33 years old and I have elastolysis of the middle dermis for 4 years. it began when I was pregnant and since then it has grown: torso and arm ... I am followed in France in Toulouse. on July 23, you can be hospitalized for more in-depth exalens. There is currently no treatment.

here is my email if you want to trade in private

[e-mail]

kisses

[rarenothelpfull]

Took over 20 years to get a diagnosis and it doesn't help to be told it is rare. I would be happy to take part in clinical trials or get advice to see if plastic surgery is viable. Just as well that I am growing into my ageing skin now. Depressing as it is , there are other people going through a lot worse. I wanted to know if there was a self help group around for a good general moan or perhaps someone among us has found somethig to help the itch etc.

[Elo11]

Hello

you have given birth to your last post

everything went well?

I look forward to reading you

[Londonplanner]

Hello! I have just been diagnosed with MDE.

Its so rare I thought I was the only one.

[Vicbillz]

I was diagnosed with MDE in 2019. It’d had been developing since 2017 from my trunk to arms to neck to my back and I’m really worried it is appearing on my chin. So hard psychologically as I’ve struggled with body dysmorphia throughout my life anyway. I have ups and downs, days when I can cope and days I feel sick with worry that it will spread further. I’m 39. There is a Facebook group I’m in but I haven’t had courage to post in it yet as feel like I could be opening another can of worms. Everyone is individual and if you see someone developing worse than you you automatically fear the worst- not good mentally.

Anyway, if anyone wants to connect let me know and I will share my email address

It is extremely rare so it was nice to find this thread

Vic xx

[GeryZ]

Mid-dermal elastolysis

hola, aqui les comparto mi caso . tengo 42 anos. Desde 2018 me ha salido en un cachete el primer punto. he ido a mas de 30 dermatólogos en Buenos Aires (argentina) y en Miami (usa) donde vivo hace ya 8 años, y nadie sabia que era. Recien la semana pasada, en una segunda biopsia me dieron este resultado. finalmente ya tengo 15 puntos en mi cara, y algunos con un tamaño mucho mas grande.

Antes del diagnostico tome Isotretinoin, 20 gr, 3 veces a la semana por 6/7 meses. mi piel se mejor pero no específicamente las marcas. de hecho han salido muchas mas en el ultimo tiempo. Casualidad o causalidad, no lo se.

Pronto comezare un nuevo tratamiento con Plaquenil (Hydroxychloroquine). y algunos tratamiento estético, ya que por mala suerte esta en mi cara, y hace algunos meses en mi cuello tambien. Espero tener algún resultado

Algunas preguntas que me hago si pudiera relacionarse:

1- tengo prótesis mamarias hace 15 años (Mentor)

2- tengo DIU Milena desde hace 17 años, (lo cambio cada 5 años)

3- no como ni carnes, ni pollo, desde los 18 años - Si como pescados/huevos/a veces jamon crudo.

Ojala podriamos hablar directo entre nosotras.

Geraldine Zarandy

[CarolinChangingFaces Partner in reply to GeryZ]

Hi GeryZ Thanks for your post and sharing a little about your situation. Welcome to the Changing Faces community.

I used google translate to understand a little about what you have shared. It sounds like you have spent a long time meeting professionals to get a diagnosis for you skin condition which must have been hard. I can see you mentioned you recently received a diagnosis and started some treatment. It's really positive that you have found this space and can connect with others who may have also experienced challenges navigating the health care system.

I am aware most of the users on our forum post in English so to make it easier for other people to connect with you, I wondered if it would be possible for you to share your story in English too?

Take Care

Caroline - Changing Faces

[GeryZ in reply to CarolinChangingFaces]

Mid-dermal elastolysis

Hello, here I share my case. I am 42 years old. Since 2018, the first spot appeared on my cheek. I have visited more than 30 dermatologists in Buenos Aires (Argentina) and in Miami (USA), where I have been living for 8 years, and no one knew what it was. Just last week, a second biopsy provided this result. I now have 15 spots on my face, and some are much larger.

Before the diagnosis, I took Isotretinoin, 20 gr, three times a week for 6/7 months. My skin improved, but not specifically the marks. In fact, many more have appeared recently. Whether it's coincidence or causality, I do not know.

Soon, I will start a new treatment with Plaquenil (Hydroxychloroquine) and some aesthetic procedures, as unfortunately, it is on my face, and a few months ago, it also appeared on my neck. I hope to see some results.

Some questions I have that might be related:

1- I have had breast implants for 15 years (Mentor).

2- I have been using the Milena IUD for 17 years (replaced every 5 years).

3- I haven't eaten red meat or chicken since I was 18 - I eat fish/eggs/sometimes raw ham.

I hope we could talk directly among ourselves.