Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

ISN Video: Sclerodactyly by Amanda Thorpe

sclerodactyly scleroderma video isn videos

  • This topic is locked This topic is locked
6 replies to this topic

#1 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,616 posts
  • Location:West Sussex

Posted 16 September 2011 - 01:54 PM

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)


#2 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 16 September 2011 - 04:40 PM

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



You amaze me more and more...

miocean
ISN Artist

#3 Sheryl

Sheryl

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 17 September 2011 - 07:12 AM

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)

#4 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 17 September 2011 - 01:43 PM

Thank you Miocean and most excellent idea Sheryl!

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)

#5 Chopper

Chopper

    Silver Member

  • Members
  • PipPipPipPip
  • 124 posts

Posted 17 September 2011 - 09:14 PM

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.

#6 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 19 September 2011 - 09:32 PM

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)

#7 Chopper

Chopper

    Silver Member

  • Members
  • PipPipPipPip
  • 124 posts

Posted 20 September 2011 - 12:25 PM

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.





Also tagged with one or more of these keywords: sclerodactyly, scleroderma video, isn videos