wetherby36

Atrophoderma of Pasini & Pierini

3 posts in this topic

Hi, my daughter has a type of rare morphea called Atrophoderma of Pasini & Pierini. She is 16 years of age and was first diagnosed 2 years ago. The red marks on her body cover 2/3's of her back, buttocks and thighs. When initially diagnosed she also had a linear morphea down one leg but this has disappeared. I am extremely concerned as the marks on her back are now starting to sink and I know that once this has occurred the process is irreversible. We see a consultant once every six months and he has prescribed topical steriods in the past although this has had no effect in halting the process whatsoever. He is now suggested UV light treatment but to be honest I feel he doesn't really know what to do. I am at my wits end trying to understand this illness, get the best possible care for my daughter to avoid her being seriously disfigured for life and trying not to frighten my daughter who has no real idea of the potential outcome of this illness. Could someone please help me and point me in the right direction.

Thanks,

Jenny

Share this post


Link to post
Share on other sites

Hello Jenny

 

Welcome to the forums although I am sorry it is because your daughter has Atrophoderma of Pierini and Pasini the link I have given you includes some personal stories you and your daughter may find helpful.

 

According to Medscape treatment of the condition can be hit and miss including the use of topical corticosteroids, antibiotics, or antimalarials. It also say "...the Q-switched alexandrite laser (755 nm) to be effective in diminishing the hyperpigmentation by 50% after 3 treatments in one case."

 

I hope this information is helpful and take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Jenny,

 

Welcome to these forums!

 

I'm very sorry to hear that your daughter has been diagnosed with Atrophoderma of Pierini and Pasini. It is a very rare disease and I can understand how worried you're feeling.

 

I can't actually recall any of our members suffering with this disease but if there are any, I'm sure they'll be along to give you more first hand advice. I've attached a list of Scleroderma specialists as we do recommend that you consult one if possible.

 

Do please keep posting and let us know how your daughter is getting on. :emoticons-group-hug:

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now