No diagnosis

I haven't posted for while my daughter had some marks appear on her upper thigh stomach and shoulder a while ago. We saw a consultant dermatologist who aaid possibly morphea. As more started to appear she had a punch biopsy. The results came back showing 'post inflammatory scarring ' so she still has no diagnosis. The consultant said he needs to do a biopsy before the dark patches appear but that's when we first notice them. She is getting more and more appear we are given steroid creams ut they make no difference. We live in the west midlands. Can anyone recommend a specialist in morphea that we can request a referral to? Thank you.

4 Replies

  • Hi my daughter has morphea. I think your best bet would be to ask for a referal to a specialist centre where there will be a paediatric dermatologist and rheumatology service, they usually work together and then outreach to district hospitals. We go to leeds who share care with york. I would say if you are in the West Midlands that Birmingham childrens hospital or liverpool Alderhey would be your nearest.

    I'm going to work now but if you want to chat further please feel free to message me. Good luck.

  • Hi,

    I know your frustration, I have morphea on my face and inside my mouth. Even though I have had a biopsy on my face and inside my mouth, they still only describe it as possible morphea. I am from the north east and are seeing a good consultant who is an expert in scleroderma, she is called Bridget Griffiths. I also see a dermatologist called Mr Meggit.

    I feel that with the condition being so rare no one wants to commit to a definite diagnosis. And as far as the treatment goes it is just trial and error with medication, I am taking Methotrexate and Tacrolimis at the moment which seems to be working, but I have quite bad side effects. I have also had Mycophenolate and some other steroid creams. One other thing that worked initially was Haelan tape.

    Good luck hope everything goes ok

  • I have Morphea and am lucky enough to see a specialist scleroderma/skin consultant at the QEHBirmingham. Her name is Julia Scarisbrick, you can google her. If u want more info then please message or email me. Helen

  • Hello, as others have mentioned, it is a good idea to ask for a referral to a specialist centre. We have a list of specialists on our webpage, 4 are in West Midlands. You can find the list here:

    If you do need any assistance in seeking your referral then please do get in touch with the Scleroderma Society. Best Wishes.

You may also like...