Badmass

Lifetime scleroderma sufferer, first time poster

3 posts in this topic

Hello all,

 

My name is Matt. I was born (as far as I know) with localized scleroderma on my inner right thigh, it wasn't diagnosed until I was around the age of seven after a lifetime (at that point) of doctors visits and poking and prodding. My mother eventually tired of seeing her son treated like a lab rat and decided to stop taking me to the doctor when they just shrugged their shoulders and said I'd be dead or in a wheelchair by the age of 16. 

 

Well here I am about to turn the dirty thirty. Still walking and talking and served six years in the military to boot (hid my sclero). I am now currently looking to help in any study or trial that will have me.

 

My scleroderma has spread to my right calf and up my right side and back.

 

I am also looking for anyone who can tell me if I should be concerned about my localized sclero making its way near my spine.

 

Thank you to anyone who took the time to read this!

 

Sincerely,

 

Matthew "Badmass" B.

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Hi Matt,

 

Welcome to these forums!

 

I'm sorry to hear that you've been suffering from localised scleroderma for so many years.

 

Whilst obviously it would be better if you did not have the disease, localized scleroderma is relatively mild, and may be related to systemic scleroderma only in terms of similar superficial symptoms, such as the appearance of skin biopsy under the microscope. I've included a link to our medical page on Localized Scleroderma, which does give information about the different types of localised scleroderma, such as Morphea, which tends to be the most common type. There are various treatments for Morphea, of which UVA1 phototherapy is now the recommended first-line treatment.

 

We do recommend that our members, if possible, consult a listed scleroderma expert, as this complex disease does require specialised knowledge and expertise.

 

I've also included a link to our medical on Scleroderma Clinical Trials: Current Studies, Open Enrollments,

which I hope will give you some more information on current Scleroderma Clinical Trials.

 

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)

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Hi Matt,

 

Welcome to our forums. I'm really happy you found us. 

 

I'm sorry to hear of your localized Scleroderma. This disease can certainly be a challenge, but sounds like you are handling it like a rockstar. Jo has provided you with many good and informative links. I do hope you find some answers in them.

 

Again welcome!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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