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Finally ready to learn about my morphea - help?

morphea

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#1 bonnie1986

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Posted 09 September 2014 - 03:53 PM

Hi folks!  I've had morphea since I was born 28 years ago, and I'm just finally ready to dig in to what that really means.  

 

I was born with 1 morphea patch, and over the years continued to get more and more on my stomach, hips, back, and sides.  No doctors ever said they knew what it was, or cared to look in to it. Finally at 24 I went to a dermatologist to see what the deal was; she suspected morphea, did a biopsy, and called me to confirm her suspicions. (Never did a blood test - thoughts on whether that matters?) All she said was to put a topical cream on them if I got new ones, and that it wouldn't lead to general scleroderma - and that was that. 

 

I don't recall ever having any discomfort with the patches, just always got new ones every few months or years (have 20+ now).  Recently though I've been under a LOT of stress/anxiety with a few things, and I really feel like I'm having pain in the areas by my patches. I may be a *slight* hypochondriac about things these days ;) and feel like I want to start sorting out - what are the implications of having morphea? Could there be other auto immune things going on with me? I've had chronic stomach issues all my life - could that be related? I just want to know things!

 

I've made an appointment to go back to the dermatologist for the first time in over 4 years to make them answer my questions too ... but would love to hear from some folks who have been down this road! 

 

Thanks!

Bonnie



#2 Joelf

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Posted 11 September 2014 - 02:51 AM

Hi Bonnie,

 

Welcome to these forums!

 

I'm sorry to hear that you've been suffering with Morphea for such a long time and I've included a link to our medical page to give you some more information. Unfortunately stress and anxiety can exacerbate autoimmune problems, although I realise it's easier said than done to reduce it! ;)

 

Your decision to make an appointment with a dermatologist is a good one and we do recommend that our members, if possible, consult a Scleroderma specialist. Currently, UVA1 phototherapy is widely recommended as a first-line treatment for Morphea and it is also used for treating it, even when well-established. I've included a link to our medical page on Treatments for Morphea, to give you some more information.

 

Please let us know how you get on with your dermatologist's appointment.

 

Kind regards,


Jo Frowde
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#3 Sweet

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Posted 11 September 2014 - 01:14 PM

Hi Bonnie,

 

Welcome to the sclero forums!

 

I'm sorry to hear that you've been suffering with morphea. You've come to the right place for accurate information, moral support and friendship, with people that truly get what you're going through. 

I'm so glad you are seeing a derm. doctor. Do keep us posted won't you?


Warm and gentle hugs,

Pamela
ISN Support Specialist
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#4 Amanda Thorpe

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Posted 12 September 2014 - 03:32 AM

Hello Bonnie1986
 
Welcome to the forums! I have both systemic scleroderma and localised, being morphea and bullous morphea.

 

As you already know, morphea is a localized type of scleroderma that does not affect the internal organs and is never life threatening. A 2003 large multinational study found that 25% of people with localized scleroderma had at least one other non cutaneous (non skin) symptoms, such as osteoarticular (affecting bones and joints), neurological (epilepsy, headache, peripheral neuropathy), vascular, gastrointestinal (heartburn), respiratory, cardiac, or renal. Less than 4% of those with morphea had more than two non cutaneous symptoms and none of the people in the study developed systemic scleroderma during follow up.
 
Morphea can burn itself out after 3 to 5 years, even without treatment. There are various treatments for morphea although the current, recommended, first line treatment is UVA1 Phototherapy.

 

Scleroderma doesn't like to conform so it's possible to have an entirely different experience of it than most people, it can wax and wane so on that basis could flare anytime.

 

With regards to blood tests and scleroderma, their purpose should be to help the doctor to diagnose scleroderma or rule it out, they should not be the basis of a diagnosis. It's possible to have scleroderma and negative blood work (like myself) and it's possible to have positive blood work and no symptoms whatsoever.

 

Jo has given you the link to scleroderma experts and I would suggest you pick out the ones that deal with morphea and give them a visit. Scleroderma is a complex disease and as such needs to be managed by an expert who knows what to expect, how to treat and so forth and so on.

 

Take care and keep posting.


Amanda Thorpe
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