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Deep Morphea

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#1 nola



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Posted 25 June 2011 - 07:52 PM

My 4 year old daughter was just diagnosed with a rare form of Morphea called Deep Morphea. Her case is believed to be congenital. According to early medical records (from her orphanage) she has had a "limb deformity" since birth. The earliest photos we have are from age two show limb issues. She has discoloration, tight skin, missing fat (indented area), muscle atrophy, contractures, puckered skin and difference in bone length. It appears to be isolated to her one leg and MRI showed two mildly active lesions as well as the chronic damage from older lesions.

Has anyone else or anyone's child received this diagnosis and if so, how was it treated? Our specialist recommends a low dosage steroid administered by IV over a three day period each month and daily oral meds. Would appreciate input from anyone else with experience. Thanks.

#2 Jeannie McClelland

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Posted 25 June 2011 - 09:05 PM

Hi Nola, welcome to the Forums. I'm really sorry your daughter has been diagnosed with any form of scleroderma, let alone deep morphea. I hope we can help in some way.

We do have one article on this rare form here, but I don't recall hearing that any of our currently active members or their children have been diagnosed with this type (of course, I could easily be having a 'senior' moment and just don't remember). There are some personal stories on the ISN's Main Site, including one from a woman named Merry who was diagnosed with deep morphea.

Is your doctor a scleroderma specialist? I know most of us feel it is wise to see one, if possible. I did a quick search on the National Institutes of Health PubMed site and they do have more articles on deep morphea. One of them mentioned the use of UVA irradiation, immunosuppressants, and corticosteriods, but also said that treatment is non-standardized.

Best wishes,
Jeannie McClelland
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#3 Joelf


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Posted 26 June 2011 - 12:42 AM

Hi Nola,

Welcome to these forums!

I'm so sorry to hear that your daughter has been diagnosed with Deep Morphea; it must be very upsetting and worrying for you both.

Like Jeannie, I can't recall any of our members having children with this rare type of Scleroderma. However, we do have quite a few members with children who have Scleroderma, so hopefully they will be able to empathise with you and offer you support throughout your daughter's treatment.

Do please keep us informed as to how your daughter's treatment is progressing.
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#4 Amanda Thorpe

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Posted 26 June 2011 - 09:00 AM

Hello Nola

Welcome to the forums although I am sorry it's because of your daughter's diagnosis. I hope you find the support and information you need.

Take care.
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#5 Sweet


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Posted 27 June 2011 - 12:44 PM

Hi Nola,

Welcome to these forums!

I'm so sorry to hear that your daughter has been diagnosed with Deep Morphea; as a mother I know how upsetting this must be for you. I do know we have several parents on the forums with kids that have scleroderma but I'm not sure it's the same type as your daughter is suffering from.
Warm and gentle hugs,

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