Today is World Scleroderma Day and was created to raise awareness of what it means to live with this disabling disease and recognise the bravery of those who live with this rare and incurable disease, which is often progressive in nature affecting other areas of the body.
As noted in a previous post there are many different themes to help celebrate the day around the world.
What is Scleroderma?
Scleroderma is a chronic disease characterized by excessive deposits of collagen in the skin or other organs. The localized type of the disease, while disabling, tends not to be fatal.
However, diffuse scleroderma or systemic sclerosis, the generalized type of the disease, can be fatal as a result of heart, kidney, lung or intestinal damage.
Unfortunately in November 2018 I was initially diagnosed with this disease and in the past few years it has progressed to involve my lungs.
You can find out more about Scleroderma here, and read about an array of interesting facts about Scleroderma on the Did You Know? page.
You can even check out my own health journey here if you’d like.
To help commemorate the day people are encouraged to wear teal, the official color for scleroderma and to share their stories on social media. Any way of raising awareness can go a long way for both those affected by this disease and those living with someone who is.
Possibly you’d like to watch the movie For Hope, a made-for-television drama film starring Dana Delany and directed by Bob Saget.
Originally released in 1996 it is based on Saget’s sister, Gay and shows the experience of a young woman fatally afflicted with the disease scleroderma.
“It was a very emotional and fulfilling project, a moment in my life that I will always treasure,” Bob Saget said in November 2021, in honor of the movie’s 25th anniversary.
“I believe that TV movie helped put scleroderma on the map for many. I will spend the rest of my life dedicated to helping our amazing Board of Directors at the incredible Scleroderma Research Foundation to work with the best medical minds in science as we raise the funds for research to one day find a cure.”
It is available to view for free here.
If you are able to, maybe you can help donate monies to one of the following:
The Scleroderma Support and Education New Zealand Trust Givealittle page which has been set up to support & educate people living with Scleroderma, empowering them to make informed decisions regarding their own health care.
The Scleroderma NZ Givealittle page has been set up to raise funds for the national support group which helps patients and their families to cope with this rare and difficult disease to manage.
Thanking you in advance 🙂
The life and times of Perry... 