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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 Shelley Ensz

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Posted 22 October 2010 - 03:04 PM

We have had over 50 new forum members in just the past few weeks. Some of them have emailed our admins privately but have still not posted a message.

I understand how you feel. It seems daring to post a message in a new forum, and sometimes we feel at a loss for words, or wonder if/how we'll fit it. Will we be welcomed? Is there already a clique here? What if nobody answers us?!

Our support specialists are standing by, eager to greet you and make you feel welcome. You don't need to say anything earth-shattering or even extensive. Just begin by posting something, anything. Our team will edit your message if by chance it's not entirely within the guidelines right off the bat -- we understand! So you really don't have anything to lose, and lots of wonderful friends to gain.

We also know that there are thousands of daily lurkers out there, who haven't even joined yet but faithfully visit every day. We don't want YOU to be the one who says, I've been lurking for five years and now I'm finally joining and introducing myself. After all, you'll just wish that you'd done it five years ago!

Okay, so who's going first? You know it's time. We know how you feel. Just log in to Sclero Forums, open this topic, and select the button that says "Add Reply". Tell us your name, and perhaps why you decided to join Sclero Forums. Ready, set....
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.

#2 Sweet

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Posted 24 October 2010 - 10:57 AM

Standing by to launch the welcome wagon once you post! :flowers:
Warm and gentle hugs,

Pamela
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#3 Shelley Ensz

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Posted 25 October 2010 - 01:19 AM

I should mention that I made a mistake -- er, no, that would be an "improvement opportunity" in ISN-speak -- in my first post here. Originally I said "Just reply to this email" and I later edited it when I realized what I had done. The majority of forum members receive all the forum posts directly into their email account (it's an option when we register). It is impossible to post to the forums by just replying to forum messages via email. Those messages will go nowhere!

To actually post a message in Sclero Forums, the process is to first log in to Sclero Forums (that's an absolute necessity), open this topic, and select the button that says "Add Reply". Tell us your name, and perhaps why you decided to join Sclero Forums.

Or, you can select the button that says Start a New Topic, and enter your topic and message. Either way works.

But, you cannot post by just hitting reply to any copies of forum messages that you might be receiving in your email program! My apologizes for sleeping at the keyboard again.

I'll start the introductions here to help break the ice. My name is Shelley. I'm from Minnesota. I have systemic scleroderma along with other things. I love to paint and sew. Anything that sits still for more than five minutes in our place is likely to get decorated or sewn together! I'd love to know what your hobbies are, as I think they are a terrific tool for helping to not only cope, but thrive, with a chronic illness.
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.

#4 barefut

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Posted 25 October 2010 - 06:41 AM

Hey Everyone!

Boy it's been awhile since I've been on here. I think I'll have to blame it on facebook and Scrabble! :blush:

I have missed everyone and now can't wait to get caught up with old friends and meet all of our new members too. If I have not met you yet, here is a brief-ish rundown on me:

I was diagnosed with diffuse systemic scleroderma in January 2006 after going for 6+ years with a "probable Lupus" diagnosis. I am a single mom to 2 great boys, ages 12 and 8. If it weren't for them I probably would not even get out of bed most days. My main symptoms are muscle/joint pain/stiffness, fatigue, and gastrointestinal issues. I also have Raynaud's, skin and lung involvement. I believe the best medicine is humor and ISN. They both have SAVED me!

I joined ISN in October 2006. Some time later, I spent about 8 months as a Support Specialist until my personal life became full of divorce papers, IRS woes, and the like, I decided to "retire" since I was not able to give it my 100%. I was also invited to be a blogger early on and have enjoyed torturing you all with my "barefut impressions" on life with scleroderma. I have not blogged in awhile either - shame on me! So I'd better get to it!

Looking forward to catching up with you all and hearing from new members too!

Stay Healthy, Happy, Safe and Warm!

#5 Amanda Thorpe

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Posted 25 October 2010 - 08:58 AM

Hello newbies, I'm Amanda and I'm a sclerodermian. I have diffuse systemic sclerosis with heart involvement to be more specific. I've been here in the weird 'n' wacky world of scleroderma for 3 years now and plan on being for many more to come.

If you're reading this why not join in this thread? You know the best people have scleroderma and everyone has a unique experience of it which makes everyone with scleroderma unique. Why not share your uniqueness with us, you're in great company.

Take care.
Amanda Thorpe
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#6 BC Gal

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Posted 27 October 2010 - 11:57 AM

Hi, my name is Annie and I have recently been diagnosed with Grzybowski syndrome, an extremely rare skin disease similar to scleroderma. I am a relative newbie to the site and I am looking forward to getting to know everyone :)

I'd be really interested in hearing from anyone that has Grzybowski syndrome. There's only 30 of us in the world so far, that makes us very unique! :jump-for-joy:

BC Gal

(Annie)

#7 Shelley Ensz

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Posted 28 October 2010 - 03:49 AM

Hi Annie,

Thanks for taking us up on our invitation for new members to introduce themselves here. I hope that eventually we'll have another Grzybowski to keep you company here, but in the meantime, you know you have all of us.

And for the rest of our members who haven't posted yet, wouldn't it be nice of you just to pop in and say hi to Annie, if nothing else? Not often can you meet someone with a rare-rare-rare disease like that!
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.

#8 barefut

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Posted 28 October 2010 - 02:34 PM

Hi Annie,

30 in the world?! Wow and I tought I was special :) Glad you have come to join us. What can you tell us about Grzybowski syndrome? What were your first symptoms and when were you diagnosed? I'll bet you had your doctors in a quandry for awhile with such a rare one.

Welcome! And I look forward to getting to know you better.

#9 miocean

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Posted 28 October 2010 - 06:35 PM

Annie,

I am curious, with your disease being so rare, how did you ever get diagnosed? So many on this forum can't get a diagnosis. With me it was easy. I have diffuse scleroderma that came on rapidly with almost every diagnostic symptom plus a positive ANA. Except for the extremely rapid onset, I am classic, and even that is a symptom. Six years ago, my skin hardened all over my body, my kidneys failed, I developed fibrosis on the lower lobes of my lungs, my GI problems intensified, Raynaud's entered my life, and, most recently, I developed pulmonary hypertension. I have been fortunate. Over the years my skin has softened, my lung disease hasn't progressed, and I had a kidney transplant in March 2010.

Keep posting. You can help us and we can help you. It is one big, happy family of people suffering and surviving with this rare disease. But YOU have us beat!

miocean
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#10 Annie20

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Posted 29 October 2010 - 02:24 AM

Hi Annie,

Welcome to this terrific forum! I"m an Annie also. :bye: Take care

Annie
Diffuse Systemic Sclerosis, (Scleroderma). Lung, skin and gastrointestinal involvement.

#11 debonair susie

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Posted 29 October 2010 - 04:42 AM

Hi Annie (BC gal)!

I've seen you post, but cannot remember if I welcomed you to the forum!
I'm so pleased that you found your way here and hope that you find comfort/support and
that we see you here often. :)

We have a very large family here, so there is a lot of support needed, as well as enough to go around! :rolleyes:
Special Hugs,

Susie Kraft
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International Scleroderma Network (ISN)

#12 NorthStarHope

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Posted 30 October 2010 - 07:47 AM

Hi Annie,

I just wanted to let you know that you came to the right place, ever since I
found the Sclero Forums, I have made many new wounderful friends, my sister suffers from diffuse scleroderma and at times you feel so alone. Finding this forum has made me have such a positive outlook!

Welcome, and best wishes
Sincerely,
NorthStarHope :)

northstarhope* :emoticons-i-care:  :thank-you: 


#13 NorthStarHope

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Posted 30 October 2010 - 08:05 AM

Hi, Barefut

On my last post it seems like I hit the post button before I was
done. Sorry about that, I just wanted to say Hi and thank you for
telling us a bit about yourself. I look forward to makeing new
friends.
Take Care,
Sincerely,
NorthStarHope :)

northstarhope* :emoticons-i-care:  :thank-you: 


#14 BC Gal

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Posted 31 October 2010 - 07:13 PM

Hi again everyone :) Thanks again for the warm welcomes!

In regards to some questions.....

I found my diagnosis myself initially by simply typing in my symptoms into google and this medical article came up (the same one that is listed as a Grzybowski resource on this website). I read it thoroughly, looked at the pictures, and took it to my doctors for consideration. At first all of my doctors were skeptical but one doctor researched it and contacted my other doctors and said he thought I had this very rare disease. He believed me and really listened to me. This was 8 years ago. As my symptoms progressed, I continued to have the classic characteristics of Grzybowski syndrome. My head doctor contacted the primary researcher of Grzybowski syndrome in New Zealand and asked her opinion. After speaking with her my medical team started considering me a Grzybowski patient and various treatments began, none of them very successful. I get some relief from azathioprine but it is minimal. My guess is that my condition is so weird and rare, so many doctors were looking at me and wanting to diagnose me! My doctors were stumped for a very long time.

My symptoms are hardening and pain of the facial skin - I have a mask like look to my face (it is swollen and thick), a bright red follicular rash that covers my entire body from the jawline and down, numerous keratoacanthomas that grow all over my body and have to be excised with a scalpel or moh's surgeries, severe lower eyelid ectropion which has caused corneal scratches over the years (now I have double vision), gynecology issues, heart issues, and fibromyalgia. I may have forgotten some symptoms, I'll add them if I recall anymore. It's funny because all of my symptoms are just my new "normal" so I forget that other people aren't like me and are bothered with the symptoms I have every day.

Please feel free to ask me any questions. I'd be happy to answer them.

I hope that we hear from other newbies too! :)

BC Gal
(Annie)

P.S. Hi other Annie! :)

#15 Amanda Thorpe

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Posted 01 November 2010 - 06:02 AM

Hello Annie

How true, new symptoms just become part of our norm, who'd have thought we'd ever be living a lives where we said that!

Take care.
Amanda Thorpe
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#16 barefut

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Posted 02 November 2010 - 02:13 AM

Hi Annie,

Thanks for sharing!

"It's funny because all of my symptoms are just my new "normal" so I forget that other people aren't like me and are bothered with the symptoms I have every day."

How very true! Isn't it amazing how we adapt?!

#17 barefut

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Posted 02 November 2010 - 04:54 AM

Hi North Star Hope!

Love that screen name. Looking forward to getting to know you! Glad you are here ♥

#18 tw1nkles

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Posted 11 November 2010 - 10:29 AM

I'm new here on the forum.

About 7 months ago I was diagnosed with limited scleroderma (CREST Syndrome). I originally saw my doctor for swallowing issues. After an endoscopy and an esophageal motility study, we found out that I have zero motility in my lower esophagus and no pressure from the sphincter muscle leading to my stomach.

I am taking omeprazole to help with the acid, and nifedipine for Raynaud's. I've had the Raynaud's since I was a late teenager, but the swallowing problems started about 4 years ago. I never had health insurance until I got married last year, so never saw a doctor until then. What a surprise!

My primary doctor sent me to a GI specialist. The GI specialist did a bunch of tests and sent me to a rheumatologist. The rheumatologist did a couple of tests and told me I have CREST, I have since decided that I need a new one. (The search begins!) There aren't any scleroderma specialists in my area at all, and I can't afford to fly all over the country, but there's got to be someone nearby that knows a little more.

It's good to see other people going through some similar situations, so I'm not completely alone. My husband tries to be supportive but doesn't understand what I'm going through at all.

:thank-you:

#19 Jeannie McClelland

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Posted 11 November 2010 - 12:02 PM

Hi Tw1nkles,

I love your screen name! Welcome to the Forum. I always say I'm sorry you found us because of your diagnosis, but really, we make the nicest friends here, so I'm not entirely sorry. :blush:

Have you found your way around the main site? There is a lot of information both about CREST and esophageal dysmotility in the section on Gastrointestinal Involvement that you will probably want to look at in due course. Other good resources are the patient stories and doing a keyword search within the Forums.

I hope to see you around!

Best wishes,
Jeannie McClelland
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#20 Lynnie

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Posted 11 November 2010 - 01:50 PM

Hi to all the newbies! I was diagnosed 2years ago with limited scleroderma and if I hadn't found everyone on this site I think I would have given up mentally. I was so scared and uninformed as to what to expect and were to go for a friendly ear to listen to me. It's been my life line in a very unusual way dealing with a very unusual disease. To any of you out there take the first step say/ask something. Don't be afraid, most of us are at times but the friendship people will give you here helps you to not feel alone in a uncertain world. Go for it!

Lynn xx