Some of my mixed connective tissue disease (MCTD) symptoms are consistent with scleroderma, which literally means a thickening of the skin. It can affect all of the body systems however. One of my friends lost her sister to this nasty condition.
My most common issues are with circulation, and dryness of the skin. It can get red, inflamed and then thickened. It's a bit like scar tissue. Like scar tissue it doesn't stretch like normal skin does. The skin can get very tight and restrict movement of the joints; e.g., in one scary episode, the skin on my wrist became so dry, thick and hard that I was unable to bend my wrist. Fortunately, it settled down and is much better now. I am a lucky one.
I manage these symptoms by trying to stay as healthy as possible to avoid autoimmune flares and smothering my skin daily with moisturisers and special creams and ointments. It is horrible to have a shower and feel all nice and clean only to spoil that clean feeling by applying ointments etc. I also exercise as much as I can to keep my joints mobile. Crochet helps to keep my hands moving.
To mark World Scleroderma Day, I hereby launch a resource page with links to anything you might like to know about scleroderma. You will find it at the top of this page, underneath the Lupey Loops masthead.
Scleroderma does not receive a lot of publicity, unlike other conditions such as diabetes, heart disease or asthma, so it is important to raise awareness so that sufferers can be better supported and the condition better understood through research. When I mention scleroderma to people, they usually have never heard of it or have no idea what it is.
Do you or anyone you know suffer from scleroderma?
You are welcome to share your story on Lupey Loops. Leave a quick comment below or more lengthy replies by email to jodiebodiecrochets@gmail.com
If you would like to assist with either fundraising or awareness, Scleroderma Australia are running an event this year called "Snuggle Up for Scleroderma".
You can find out about this through their website or you can meet Team Scleroderma Australia and get more information about fundraising and sponsorship on the Everyday Hero page: <https://give.everydayhero.com/au/team-scleroderma-australia>.
One of the activity suggestions was to snuggle up and host a "knitting circle" but I will suggest a "crochet circle"!
I have not signed up to be sponsored this year because I didn't get myself organised on time (and I am feeling too sick and tired to add any more commitments to this year's schedule).
[Conscience interjects: "You need to follow your own advice and organise yourself!"] Who feels like a hypocrite? Never mind, there is always next year!
Links
- Everyday Hero: http://everydayhero.com.au/
- Lupey Loops Scleroderma Resources page:
http://lupeyloops.blogspot.com.au/p/blog-page_6.html - Lupey Loops, "Live Well: Organise Your Life", blog entry, 1 June 2014:
http://lupeyloops.blogspot.com.au/2014/06/live-well-organise-your-life.html - Scleroderma Australia: http://www.sclerodermaaustralia.com.au/
- Team Scleroderma Australia: https://give.everydayhero.com/au/team-scleroderma-australia This page has now expired.
- World Scleroderma Day, 29 June 2014:
http://www.sclerodermaaustralia.com.au/contact/2-uncategorised/98-world-scleroderma-day
Thank you so much for sharing this Jodie :-) I had heard of scleroderma but I couldn't have said what it was only that it related to skin, so this post is very helpful. Goodness me, the thickening of your wrist must have been very scary and then such a huge relief when it abated.
ReplyDeleteTracey xxx
I hadn't heard of it before my own diagnostic adventure, but I am glad this has been helpful. The scariest thing about scleroderma is that it can affect any of the connective tissues which includes blood vessels and internal organs. Some people have mainly skin involvement and others have internal involvement as well. I suspect that it may be a contributor to problems I have had with my digestive system.
DeleteDoing the "cream routine" today, I was reflecting that it could be worse - it's not as bad as needing needles all the time, but that doesn't mean I have to like it!
ReplyDelete