Investment in medical research is crucial for progress in scientific understanding.
And of course, PAIN. Making for the daily mantra ‘Ah great, another day to spend in bed’.
For, most autoimmune patients, and scleroderma patients alike, hearing ‘But you look so well’ is a welcome compliment, however, it can be extremely frustrating, when the actual reality, is that, you feel quite the opposite.
|Hottest day of 2013, Im wearing Uggs and gloves|
However, not all Raynaud’s patients will have an autoimmune condition, this is when it is known as primary Raynaud’s.
All of the patients reported exhaustion, swelling and pain to be current ongoing unmet clinical needs.
Huge thanks to the current president, Dr. Peter Lanyon, for his outstanding commitment to the rheumatological community as a whole.
An edited version of this article was published here in my Column with Scleroderma News.
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