Scleroderma Awareness Month
Find out what's happening for Scleroderma Awareness Month in June
Findings from our survey highlights the challenges faced by many in the UK in receiving a diagnosis for scleroderma, with some waiting up to a decade for confirmation that they have the condition.
The findings show that a quarter of people experiencing symptoms of scleroderma had to wait more than two years to receive a diagnosis, with 6% waiting more than 10 years.
Scleroderma is a rare auto-immune condition which can cause serious health complications, irreversibly damaging vital organs, which is why earlier diagnosis is vital to the long-term health and quality of life of people with this life limiting and life-threatening condition.
The survey also shows that over a third (37%) of people with scleroderma made more than five visits to their GP before a diagnosis was made and over a fifth of respondents (22%) made 10 or more visits.
This needs to change so we are asking you all to join us in by standing up and saying #WeNeedEarlierDiagnosis
We the undersigned are calling for greater awareness and understanding of Scleroderma and Raynaud's, to ensure that patients are diagnosed far sooner.
Scleroderma is a rare, chronic disease of the immune system, blood vessels and connective tissue. 2.5 million people worldwide have scleroderma, and in the UK there are 19,000 people diagnosed.
Currently more than half of patients diagnosed with diffuse systemic sclerosis, a potentially life threatening form of Scleroderma, will develop significant heart, lung or kidney problems within three years. (see Shand et al).
Research shows that early recognition, diagnosis, and aggressive management can improve the prognosis of systemic sclerosis (see Chris T. Derk, MD, MSc)
At SRUK we believe more can be done to diagnose the condition early and ensure appropriate treatment is given.
For this to change we need to see more people diagnosed sooner, so we are calling for earlier diagnosis of systemic sclerosis, through:
Add your signature today and support the campaign to get earlier diagnosis for everyone affected by scleroderma.
We will be sending the petition to Jeremy Hunt, Health Secretary.
You will also be able to download a letter detailing the above and the number of signatures received. We would welcome you to print the letter and send to your local MP. For more information please email firstname.lastname@example.org
By working together we can improve the lives of everyone affected by Scleroderma and Raynaud's.