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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 Sol R.

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Posted 08 April 2010 - 12:27 PM

I always knew that I would never be a hand model. ^_^

Since I was little I marveled at the appearance of my hands, a bit wrinkled for my age with knotty knuckles and long fingers. Some classmates said I had "mummy" hands, comments that I laughed at and ignored. My mother's hands looked just like mine, and so did my grandma's, and I never worried, even if I wasn't completely fond of their appearance. I didn't really expect them to change. Imagine my surprise when they started to do so, and not exactly in the aesthetically pleasant way!

My name is Sol and I'm 22 years old. I started developing the all-too-familiar Raynaud's when I was around 15, and I didn't stress too much about it, since I had moved to a different, slightly colder city. I did start stressing, however, about a year later, when I started to develop digital ulcers. Peru, my home country, is a place with mild weather and while I could make sense of Raynaud's despite not actually having been diagnosed, the ulcers were too scary for me to handle. Out of panic, I concealed them with band-aids and did my best to prevent my fingers from any impact, since as many of you would know they become unusually sensitive. I had recently started to take piano lessons: no sooner than I'd started I gave them up to avoid discomfort. Fortunately, this didn't occur too often. I was able to make it for a while without telling anyone about my situation.

But then, of course, the time came to face my fears. My right index finger started to shrink (oh yes, the accurately named "stumpy fat finger syndrome"). This coincided with a period of transition, as I prepared to come to Canada for my university studies. Once here, I went to the clinic on campus where I had some blood work done, and I was sent for an x-ray of my right hand. After completing it, the nurse asked me if I'd had any trauma on my finger because "a part of the bone was missing". I still don't know how I kept my composure. The doctor in the clinic referred me to the hospital, to a doctor who referred me to another doctor, and then yet a third one. That's where the journey stopped. She diagnosed me with scleroderma sine scleroderma, and also introduced me formally to the term "digital resorption". When she explained the CREST symptoms it felt to me like those times when you're introduced to someone you see all the time, but never asked for its name. Mind you, the E section was (and thankfully still is) unknown to me. What followed were MRIs, CT scans, pulmonary function tests... you know how it goes. Until fairly recently, everything was under control until I had a CT scan which showed a light thickening of my lungs. While I know it's nothing to worry about yet, I've been referred to yet another doctor, with whom I have a pending appointment.

My family is an amazing support system to me. We all live in Toronto and I'm considering moving somewhere else, since the winters here won't do me any good. I'd like to finish my undergraduate here since I have a year to go, but it all depends on how everything plays out in the following weeks. Initially, I didn't do any research on the web, but I wish someone would've told that to my mom, who encountered the worst case scenarios early on and became deeply worried. I only started researching after the doctor called about my lungs, and when I came across the prospect of pulmonary fibrosis I felt the weight of the world on my shoulders. Now I just try to put things in perspective and see where my life will take me, despite my condition. Oh, and I don't google symptoms anymore. :D My friends have yet to be informed, but I feel like they have nothing to worry about for now, and that I'll be able to explain things in due time.

It feels great to find such a positive community where I can discuss these issues. To all of you, I'm very excited and look much forward to meeting you. Hugs! :bye:

#2 Shelley Ensz

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Posted 08 April 2010 - 01:18 PM

Sol, welcome to Sclero Forums!

Since your introduction is so nice and thorough, I'm also putting a copy of it in our new Personal Stories subforum.
Warm Hugs,

Shelley Ensz
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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.

#3 Margaret

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Posted 08 April 2010 - 02:55 PM

Hi Sol ,

I just wanted to welcome you to the group and tell you that my son was diagnosed with sine Scleroderma at age 18. That was changed to UCTD nine months later after he had a good response to Plaquenil. Anyways, he started with the E --esophageal dismotility, positive blood work, 20 lb wt loss, loss of vocal cords, major fatigue, and chest tightening (costochondritis). He would complain that his food was stuck and wouldn't go down. He started the Raynaud's this winter.

Take care, Everyone.
Margaret

#4 Sweet

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Posted 09 April 2010 - 03:55 AM

Welcome Sol!

So happy you have joined our family. :flowers:
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 Amanda Thorpe

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Posted 09 April 2010 - 05:42 AM

Hello Sol

Welcome to the forum, you are indeed in the place to be!

Take care and keep posting.
Amanda Thorpe
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#6 Sol R.

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Posted 10 April 2010 - 01:14 PM

Thank you, ladies, for an incredibly warm welcome! :thank-you:

Shelley: Wow! I certainly didn't expect my story to end up there, especially seeing as how I just arrived here ^_^ Thank you so much!

Margaret: I'm sorry to hear about your son. I look at how much my mother worries about me and I think I can understand how it must feel. Since he just started the Raynaud's, I'll suggest mittens over gloves any time (in my experience, they keep the fingers less cold) and hand warmers (which are great when you can fit them inside the mittens!). ;)

Sweet, Amanda: You guys are so sweet (pun partially intended)! Thanks for the love! :wub:

See you guys around!

Hugs,
S.