Today is World Scleroderma Day, but of course, each and every single day is important for all of us suffering from this condition. We are always fighting for our voices to be heard and to raise awareness for all of the illnesses, visible and invisible. So this month I made a promise to myself that I’d find the courage & strength to open up today to inspire & support other people battling chronic illnesses.
Scleroderma, is a rare, chronic disease of the immune system, blood vessels & connective tissue and affects 2.5 million people worldwide with sadly no cure. There are a few variations of Scleroderma & I have limited systemic sclerosis meaning that the excess of collagen causes scarring & stops the affected parts of the body such as the heart, oesophagus, blood vessels, kidneys, lungs, blood pressure & digestive system from functioning normally.
Currently it’s estimated that 2.5 million people are living worldwide with Scleroderma, including 19,000 in the UK, with 1,300 being diagnosed every year. So this month, the SRUK is calling on people to #KnowScleroderma better in a bid to both help people with the symptoms find the resources they need, and help friends and family support those that are suffering with this truly cruel disease.
For me, to accept that modern medicine cannot restore you and that there is no cure is an ongoing grieving process. So often the choices and compromises seem unfair and without reprise when battling a chronic illness, and there are many of these double-negative decisions to be made most days that people just don’t see that naturally has felt like a huge dark cloud.
However whilst Scleroderma is an extra challenge in life, a silver lining has prevailed in the way that is has blessed me with a much-needed catalyst for an abundance of self-growth. It’s freed me of things that no longer served a purpose. It’s helping me understand who I am as a person, what I really want from life & instantly established limits & boundaries that I so desperately needed to set for myself.
It also made me realise more than ever that life is a blessing and I’m more appreciative than ever. So when things get tough I have, and I will, continue to focus my mind on something that I am grateful for. Like the days drenched in pure & utter loveliness like this photo & for all the incredible souls I have in my life.
And how can you help this very important day? It would mean so much if you could share this, or any of the posts from my Scleroderma series you can find below.
Thank you so, so much for taking the time to read this and engage in any way you can. I sincerely love each and every one of you so very much & your constant love & support is the strength that I will use to create impossible things.