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#1 Kblueeyes

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Posted 08 June 2012 - 06:57 PM

Hello, just found this forum and I am glad I have. I just discovered I have morphea through a dermatologist just a couple of days ago although I have been suffering 3 or 4 years now. It just comes such a shock to the system because I thought I was going nuts having this tough glazey skin and bumpy texture. No doctor could tell me what it was (but to be fair it is rare) . I'm sort of relieved knowing a name though. For a while all I could do is freak out because "what is wrong with me is it getting worse?" just kept repeating in my head. I would hit up google and medical forums just hoping to pop by the symptoms I had to see if they were mine. Just kind of a load on the system. I've been almost obssessive on this subject looking it up for hours.

I digress. Just glad to have a place to look. Maybe not be such a worry wart (which probably doesn't help the disease). Sorry this was so lengthy but hopefully you understand why I am a bit all over the place. How did you all react whenever you found out the exact thing that was appearing on you? Did it take you a while to stop and smell the roses? Look forward to coversing and being on the forum. :)

#2 Kblueeyes

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Posted 08 June 2012 - 11:31 PM

I like to point out as well I get scleroderma mixed up with morphea some. I wasn't given much by my dermatologist but maybe it was preventing me from over doing it.(Kinda like I am now.)I didn't exactly know what to ask either so it's my bad.

#3 Joelf

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Posted 08 June 2012 - 11:46 PM

Hi Kblueeyes,

Welcome to these forums!

I'm sorry to hear that you've recently been diagnosed with Morphea and I've included a link to our medical page to give you some more information. Morphea is a type of Localised Scleroderma and the most important thing to know about morphea scleroderma is that it is entirely different from systemic scleroderma -- and it is never fatal. I know (none better! ;)) how easy it is to want to research every minute piece of information about this unusual disease and certainly worrying is not good for any autoimmune disease.

Are you being treated by a Scleroderma expert as well as your dermatologist? We do recommend that if possible you consult one and I've included a link to our ISN Guide to Scleroderma Experts. Scleroderma is such an unusual and complex disease that it does need to be overseen by a specialist to ensure that you're receiving the correct treatment.

I'm very pleased that you've found our forums and joined our community and I'm looking forward to reading more of your posts.

Kind regards,

Jo Frowde
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#4 Shelley Ensz

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Posted 15 June 2012 - 01:14 PM

Hi Kblueyes,

Welcome to Sclero Forums! I'm sorry it's because you have Morphea, and I'm also sorry that it took so long for you to get an accurate diagnosis.

It's really amazing the diversity of people's reactions when diagnosed with anything. However I think those who adjust the best are those who seek out a ton of information on the illness, right off the bat. It takes away the "mystery" of the illness, grounds us with the facts, and helps us seek out the proper support. So it sounds to me like you will be adjusting just fine and figure out ways to live a full, happy, and long life with morphea.

:emoticons-group-hug:
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.

#5 Jeannie McClelland

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Posted 15 June 2012 - 04:23 PM

Hi Kblueyes,

Welcome to the Forums. We're a pretty friendly bunch around here and just love to have new members 'moving into our neighborhood'.

I'd bet a majority of us arrived here looking for information. I think I set a land-speed record getting home from the doctor's appointment so I could google for information! I had pretty much figured I had an autoimmune disease, but never dreamt it would turn out to be scleroderma. I was in pretty severe overload and had only retained key words: systemic sclerosis, pulmonary fibrosis, pulmonary hypertension~

I'm not sure how much sleep I got nor what I ate for the first couple of days. That all wore off, but it took some time. I get obsessive about wanting to know everything and have definite answers to the unanswerable! (And I want it right now, this instant, if not sooner.)

It will be six years in October since I was diagnosed and I've learned that being diagnosed with a chronic illness causes us to go throw a sort of grieving process: fear, anger, denial, acceptance. Not everybody goes through the same stages or in the same order and some people miss a stage or two. I think I missed out on denial (I may have been too deep into anger) but what got me through to acceptance was allowing my fairly bizarre sense of humor full rein. When you can find the funny side and trust me, there is one, things get better quickly.

So here's another big ISN hug in welcome. I hope to see you around!
Jeannie McClelland
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#6 Sweet

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Posted 15 June 2012 - 09:46 PM

Hello and welcome!!! Really glad you found us. You will love it here. There's great information, that is factual, good advice and great friends!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 Amanda Thorpe

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Posted 20 June 2012 - 03:22 PM

Hello Kblueeyes

Welcome to the forums! Have a look at our videos, in particular types of scleroderma. It can be confusing the difference between localised (includes morphea) and systemic so I decided to have both! I have morphea, bullous morphea (blistering form of morphea) and systemic sclerosis. Hooray for me!

Now you know what you've got we're glad to have you join us, you may not be though!

As Jeannie has said a sense of humour is a very good defence against scleroderma and over the years (5 for me in August!) I have enjoyed a great deal of humour, including Jeannie's, and intend to enjoy more!

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
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#8 Kblueeyes

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Posted 20 June 2012 - 08:37 PM

Hey ya'll,
Thank you all for such a warm greeting. I am glad to be here as well. (Sorry it is under the circumstances as well but that is life, eh? Your thrown to where you are sometimes maybe to understand more or help others. Or so I believe everyone can help in some situation.) Still looking around a lot on the internet but not as obsessive and I have gave the videos a gander at. It is a thing I have to stop after a while because I am a nerve bundle at times anyways. Just talking helps, eh? Thank you all for commenting your experience and it touches me what you do and how you deal. It seems this disease ranges so much and it stumps me at every stage of development in people.

I might add thankfully the dermatologist I finally seen was one of the people in the state that knows a lot more than others. At this point in development I only have cream for this and he has recommended that expensive vitamin cream.(didn't think I could mention what kind)

-Hugs to all-





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