Having a rare disease that not many people have heard of can be a lonely business, and when doctors and specialists struggle to recognise or diagnose it, or even tell you what is going to happen to you as the disease progresses (because each case is unique), it can be lonelier still.
So, Scleroderma Awareness Day was created to tell people, including the medical community, what it means to have this disabling disease. Wednesday 29th of June is World Scleroderma Day and has been set aside to recognise the bravery of those who live with this rare and incurable disease.
So, how will you mark June 29th?
Around the world there are many different themes to celebrate the day:
In Europe the Federation of European Scleroderma Associations (FESCA) invite people to share their smiles using the hashtag #sclerosmile on social medias such as Instagram, Facebook and Twitter. They also invite people to help them with spreading the campaign by using #iammypassion.
Scleroderma Australia are asking people to raise funds and show their support through their Snuggle Up Campaign. They are also helping to raise awareness by sharing the Shine Like a Sunflower campaign which is being promoted at more than 110 iconic locations across Australia by bringing a golden glow to the community. As well as on social media: #ShineLikeASunflower #ShineALightOnScleroderma #WSD2022 #SclerodermaAwareness.
In Canada for over 20 years Scleroderma Canada have been challenging people to MAKE A MOVE FOR SCLERODERMA! Walking, running, biking, yoga-ing, canoeing, gardening – if you are getting active and moving your body, you are doing it right!
“Know Scleroderma” is the National Scleroderma Foundation’s theme for June 2022 Scleroderma Awareness Month.
Throughout the month, they have been posting videos and photos of individuals affected by scleroderma on its social media.
This campaign highlights the Foundation’s belief that to know scleroderma is to understand the impact of a rare disease that is life-threatening for many and can cause physical disabilities and change lives forever.
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.
Why June 29th?
The gifted Swiss artist Paul Klee made painting his life’s work, but it was strongly influenced by his illness, systemic scleroderma. Paul Klee died June 29th, 1940.
The swiss Paul Klee Zentrum in Bern boasts the world’s most important collection of paintings, watercolours and drawings as well as archives and biographical material from all the creative periods of Paul Klee’s life which also can be visited through their website.
Scleroderma & Raynaud’s UK have partnered with FESCA to produce the below animated video to help raise awareness of scleroderma and the symptoms to look out for.
Why not assist people like me to help raise awareness of this rare disease by wearing something teal on June 29 🙂
Or possibly you could 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.
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