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Joelf

ISN Video: Sclerodactyly by Amanda Thorpe

7 posts in this topic

Amanda Thorpe has produced another video, entitled Symptoms of Systemic Sclerosis (Scleroderma): Sclerodactyly. When the skin on the fingers become tight, stretched, wax-like, and hardened it is called sclerodactyly. (Also see: Amanda Thorpe and How to Volunteer) Posted 09-15-11.

 

This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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:emoticons-line-dance:EXCELLENT, AMANDA!!!! :emoticons-line-dance:

 

 

You amaze me more and more...

 

miocean


ISN Artist

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Another, nice video Amanda. I think it really helps when others can view videos and learn the different terms and how to pronounce the words related to Scleroderma. Reading words and then getting to hear how they are pronounced is great. Sjorgrens, Telangectasia,are often pronounced wrong as well as Raynauds. It would be awesome to make a quick video of the pronounciation of some of the terms for others to be able to communicate easily with their doctors. Keep up the great work.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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I watched the video Friday evening and enjoyed it. You did a great job! I've read so many things on this site, but it's so nice to not only put a face with a name, but to watch and listen versus read. I hope there are even more videos to come!

 

I don't have sclerodactyly as of yet, so I don't fully comprehend what it must be like. You're so active in the forum and such that I hope you don't mind my asking the following questions, how challenging is it for you to type? Do you have diffuse or limited? How much time elapsed for you from the time you noticed sclerodactyly begin to the point the progression slowed?

 

Thank you for the work you do!


Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

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Hello Chopper

 

Sorry for delayed reply! I have diffuse and was diagnosed in 2007, at diagnosis I had tightened skin just about everywhere including my hands, my fingers were totally straight to start with and I couldn't bend them at all. My right fingers began curling first and more so than my left hand, go figure as I am right handed. Although some fingers seemed to curl inwards in the space of weeks it was a matter of months for both hands to go completely once the process began. I did try wax baths, splints and the like but to no avail, I know they work for some but not for me unfortunately.

 

When I was at work I was on the computer all day and was a very quick, efficient on the keyboard but now my typing is slow, clumsy, frustrating an even painful but it's possible. Had I not had the memory of how to type I don't think I would have been able to do so now. It may take me ages to post a reply and it may have had many typo's edited out of it before anyone sees it but at least I did it! Most days, of which today is one, being active on the forums is all I can manage but I think it's an achievement nonetheless!

 

I have never met anyone else with what I would call full blown sclerodactyly, in fact the other pair of hands shown in Shelley's recent slideshow are the only other pair I have seen so it is by no means a forgone conclusion for anyone with scleroderma.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Amanda,

 

Thank you so much for your reply! I am a secretary and can appreciate what you said! Thank goodness that those typing motions become second nature! I had noticed in threads that you are very informative and seemed to type well, which is why I wanted to ask you about it. It's very nice you are active here with all that typing, despite the effort it demands! You have such a wonderful outlook!

 

Chopper


Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

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