For me, in an attempt to minimise my Raynuads symptoms, hibernation began in October.
This entails being under house arrest, unless I really do need to go out.
Such ‘special days’ out are reserved for medical appointments and juicing ingredient re-stocks (living the dream, scleroderma style).
In addition, to wearing multiple layers of thermal garments and heatwarmer accessories, making for the desertion of my inner Bond Girl persona, years ago.
I have been taking Bosentan 125mg twice a day, continuously, for the last four years, and have seen a marked, and most welcome, improvement with the reduction in digital ulcers I now experience.
I am extremely grateful that my ulcers did not develop into gangrene or tissue death resulting in amputation, which I know for some patients, this is their Raynaud’s reality.
I can experience an attack which compromises of colour changes (blue, white, black, red) to my hands and feet, accompanied by intense muscle spasms throughout my entire body.
This is a most unpleasant, horrendous and painful experience, making for this social butterfly being transformed into a confined eskimo Michelin Man, in an attempt to reduce the attacks.
The level of tiredness which follows an attack is beyond exhausting.
There is currently no cure to this extremely debilitating and painful condition, requiring much needed financial investment into medical research to improve the understanding of what causes the blood vessels to spasm, as well as, what biological processes need to be activated to prevent it.
100% of the fundraising monies and donations will go towards medical research led by Dr Kevin Howell and Prof Denton, who are world leaders and authorities in Raynaud’s.
This is going to be a very busy year for raising awareness. Increased commitment for medical research investment will provide the eureka moment needed for unlocking the Raynaud’s and Scleroderma code.
An edited version of this article was published here, in my Column with Scleroderma News. January 2017.
To read my articles:
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here
March Autoimmune Disease Awareness Month 2018, Click here
Global patient video, Click here
Becoming a Patient Research Ambassador for the NIHR, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
Expert Specialist Centres, Click here
World Scleroderma Day 29th June 2016, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
2016 Rare Disease Day Patient Voice