World Scleroderma Day occurs every year on the 29th of June and it’s goal is to raise awareness about the disease, its symptoms and treatments.
In February 2010 the 1st Systemic Sclerosis World Congress was held in Florence, Italy, with participants from all around the world attending the event.
At the Congress it was agreed that 29 June would be recognised globally as World Scleroderma Day.
The gifted Swiss artist Paul Klee made painting his life’s work and he was also living with systemic sclerosis. His paintings were strongly influenced by his experiences of this condition and he died on 29 June 1940.
So, every year on this day across the world people join together to celebrate his determination and resilience, alongside that of the whole scleroderma community.
What is Scleroderma?
It is a rare, progressive and chronic autoimmune connective tissue disorder that causes excess collagen in the body and symptoms can vary from individual to individual, ranging from minor nuisance symptoms to severe multifaceted disease.
It is largely characterised by the thickening of skin and fibrosis. It can affect blood vessels and tissue throughout the body and lead to symptoms such as fatigue, arthralgia, myalgia and the Raynaud phenomenon [decreased blood flow to the fingers, resulting in coldness or numbing, which can sometimes also affect other parts of the body]. Scleroderma can also impact major organs such as the lungs, heart, kidneys and gastrointestinal tract.
While there are currently some approved treatments for the ailments that this disease causes to help manage the symptoms, there is no cure 😕
However, there are some more treatment options in the pipeline, and experimental treatments are also being developed around the world.
Patient lifestyle can also have an impact on how the disease impacts each individual; maintaining a healthy diet, getting adequate rest, exercise, and managing stress and fatigue, etc.
Seeing as malnutrition is a common symptom in scleroderma patients and can be a result of diminished nutrient absorption due to gastrointestinal complications. Diet and physical activity can help support normal growth, development and aging, and aid in maintaining a healthy body weight.
These lifestyle choices can have a big impact on overall physical health, mental well-being, and chronic disease prevention.
Early diagnosis of scleroderma is so important as it can help alleviate the stress that comes with not knowing what is going on with one’s body. With a diagnosis, patients can begin treatment and lifestyle changes that will ultimately help manage the ongoing aches and pains and any other symptoms as they develop due to the progressive nature of the disease.
To diagnose scleroderma, there are several physical and diagnostic tests. Physical examinations can be done to help reveal characteristic signs of the disease, such as thickening of the skin, especially in the face and hands. Diagnostic tests that are needed include blood tests, skin biopsies (although these are becoming less utilised in many countries), imaging, lung function tests, and nail fold capillaroscopy.
Understanding the symptoms and treatment options is an important part of World Scleroderma Day, and raising awareness will help people know when to seek medical care and that treatment options are available.
As per last year, there will be sites around New Zealand that’ll be lit up to show their support for Scleroderma patients and their families.
Last year my children and their significant others, along with wee Jack, braved the Southland weather and showed their support beside the Invercargill fountain at Queen’s Park 🙂
So, how can you help raise awareness?
Maybe you could promote this post on your social media platform / feed to help get the word out and raise the profile of this rare disease. Or visit Scleroderma New Zealand or other Scleroderma sites to gain a bit of an understanding of the disease and how it affects people like me.
Maybe you could contact someone with Scleroderma just for a chat, or offer to take them out for a cuppa, as having this disease can be quite isolating 😦
Possibly you’re in a position to volunteer your time, provide other resources / talents to help others in need, or even contribute financially to one of the Scleroderma foundations or charities in your country.
Here in Aotearoa (New Zealand) you can either drop me a line here or leave a comment below to discuss how you can help out, or you could fundraise / donate through the Scleroderma New Zealand Inc. givealittle page.
Every $ raised contributes towards raising awareness about Scleroderma, and supporting and encouraging those with Scleroderma and their families cope with this rare and difficult disease.
Blessings ’til next time 🙂
The life and times of Perry... 