FAO SQAD?????? Can you help?

[helpmepls]

Hi SQAD

I posted a question earlier & someone said you may be of help? I am sorry if this is not the case? This is the question I posted......

Please can someone give any advice on Morphea, a rare disease? The form that has been disgnosed is "coup de sabre" which means the Morphea is confined to the forehead (linear sclerderma).

Does anyone know about this disease,perhaps you suffer from it or know someone who does?

I am aware there are different forms of this disease.....I would be most grateful if anyone can give some advice/support, especially regarding Morphea Coup de sabre?

What to expect....treatment options? I already know there is no cure :-(

I would love to talk to someone who is experiencing the same thing...?

Thank you so much. I am really scared.

[Buenchico]

There's a UK support group, here:
http://tinyurl.com/qunr58

Chris

[helpmepls]

Thank you Chris....are you a sufferer?

[Sqad]

Hi, helpme.

I am not a Dermatologist but Morphea is not that uncommon and is a type of Scleroderma.

Now there are 2types of Scleroderma..1) Quite Nasty 2) No big deal and Morphea is the latter.

Treatment mainly is steroids.

Google Sclerodema for a better description than I can give.

[helpmepls]

Hi Sqad thank you for the information. I have coup de sabre which I am told can deform the face severely, and can lead to epilespy-so not sure if I can say no big deal?
It often co-exists with Parry Romberg Syndrome. APPARENTLY. I am no expert, I was only diagnosed 3 weeks ago. I will have to wait til I see Plastc surgeons in October before I know more. i am just obviously very anxious. I am grateful for your insight & will do as you suggested.

[Sqad]

helpmepls.

My comment "no big deal" was based on your post and was a generalised comment on scleroderma.

I have never heard of Parry Romberg Syndrome and clearly we are dealing with something that needs expert advice.

Presumably the diagnosis was made on skin biopsy.

Keep me informed and up to date.

Good luck

[Sqad]

helpme.....I am more confused than ever now after Googling.. Parry Romberg Syndrome.....I cannot see the relationship between that syndrome and scleroderma.

Any help would be gratefully received.

[cupotee]

https://www.facebook.com/groups/8595570962/ Anyone on Facebook there is a support group here if its any help. You can get to converse with other suffers too.