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Biomarker for Diffuse Scleroderma skin has been discovered!


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Scleromyxedema


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#1 mona

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Posted 22 July 2009 - 12:55 AM

Hi All,

It appears that I am moving farther away from a diagnosis of Scleroderma and more toward Scleromyxedema. Is anyone familiar with this condition. There does not seem to be too much information about it even in journals. Just wondering if anyone else has been worked up for this?

Thanks

#2 Jeannie McClelland

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Posted 22 July 2009 - 01:52 AM

Hi Mona,

As it happens, we have a few articles on scleromyxedema and a personal story by Phyllis Phillips, who has also provided some links. They might be helpful to you.

Hmmm, do you feel privileged moving from a disease most people have never heard of to possibly one even more unknown? :huh:

Best of luck and a warm hug,
Jeannie McClelland
(Retired) ISN Director of Support Services
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International Scleroderma Network

#3 mona

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Posted 22 July 2009 - 11:45 AM

Hi Jeannie,

Thank you for the hugs! I certainly am feeling alone in all of this. I can't even describe the condition to my family without getting frustrated. Apparently this condition is rare and there are not many resources available for review. I can tell you that my dermatologists was excited to see my case and has been wonderful. He invited my to go to a conference so others can learn from my case.

Regarding the links Jeannie, I tried them but they do not seem to be valid.

Thanks for the hugs--I really needed it:)

#4 Jeannie McClelland

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Posted 22 July 2009 - 12:09 PM

Hi Mona,

I had somewhat the same frustration when I tried to explain systemic sclerosis to my family: "Is that like multiple sclerosis? Does that mean you are going to be in a wheelchair?" My favorite was when my youngest son said I should get one of those really cool racing type wheelchairs and he'd pin-stripe it for me~ I think he was a little disappointed when I told him I probably wouldn't need a wheelchair until I broke my leg tripping over his dirty laundry! :lol:

ANYHOW! Back to the subject. I just clicked on both links (the underlined words) and they took me to the right place, but we have been having some technical difficulties. Would you be willing to try again? Alternatively you can search the main Sclero.org site by typing the word "scleromyxedema" (without the quotation marks) in that gray box in the upper right of this page, below the green header bar. (Technology is nearly as frustrating as this disease. ;) )

Warm hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#5 mona

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Posted 22 July 2009 - 10:20 PM

Hi Jeannie,

The links don't work as it takes me to a domain type of page. I cannot access the personal story but it does take me to the sclero.org page but when I click on it again it takes me to a invalid page.

Thanks

#6 Shelley Ensz

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Posted 23 July 2009 - 02:52 AM

Hi Mona,

Ah, I see that Phyllis' site on scleromyxedema has been closed. I have marked that on her story page now and changed the links. The site you'd want to go to is scleromyxedema.net.
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#7 mona

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Posted 23 July 2009 - 10:15 PM

Hi Shelley,

Yes, I discovered the yahoo group and requested to join weeks ago and am still awaiting approval. I am not really sure that the group is still active although it does show recent messages on the calendar. I was really hoping to find someone else who has this condition.

Thanks for the feedback.

#8 Shelley Ensz

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Posted 28 July 2009 - 03:23 AM

Dear Mona,

We do have other members with scleromyxedema; it's just that it is pretty rare so they are rather few and far between. Thus, they are not likely to immediately leap out of the woodwork. But by having your message here, I am sure that eventually some will contact you. It's just not the fastest way to go about it, and I hope the scleromyxedema group pulls through for you, as well.

We serve people with scleroderma and related illnesses, such as pulmonary hypertension or the other dozens of ailments listed on our site, including scleromyxedema. So please feel free to participate! Although we certainly care, we probably cannot be of very much specific help regarding symptoms or treatments, at least, not from a personal perspective.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.