- Sore or swollen fingers
- Raynaud's phenomenon; a condition where fingers and toes change colour with temperature changes, stress or anxiety
- Reflux or heartburn
June is Scleroderma Awareness Month
Throughout June we raise awareness of scleroderma across the media and the general public to help increase understanding, highlight symptoms to look out for and try to make it part of a national conversation. We do this with your help and by telling your stories.
Scleroderma is a complex, little-known and often poorly-understood condition, that affects different people in different ways. There are currently around 19,000 people in the UK who are living with scleroderma, with 1,300 people newly-diagnosed every year. SRUK provide support and information through our online programme of support, our printed publications, the Helpline and our annual conference. We encourage conversations, ask questions and advocate on your behalf.
We are the only UK charity funding essential scientific research into scleroderma and Raynaud’s to improve diagnosis, treatments and quality of life. Our goal is to improve the lives of everyone within our community and ultimately to find a cure. Our research strategy guides the projects we fund and ensures everything we do is shaped by what is best for our community. Find out more here
Scleroderma - know the symptoms
More than 25% of people with scleroderma in the UK have waited three years or more before receiving an accurate diagnosis. The following three symptoms may indicate scleroderma, so if you recognise all of these, it is important to book an appointment with your GP:
Get Involved this June - we can't do it without you!
Help us spread the word, you can share your own story or share our social media posts to keep the conversations going. You can also join our walk or organise your own fundraising event to keep our work going.
The SRUK Walk is your walk, your way. Whether it's 10 steps at home, 10 miles in your local park, on your own or with a group - help us reach our £19,000 target to fund vital support, information and research.
We have two interesting webinars for you
9th June: ‘The role of physical activity in managing fatigue in people with Scleroderma’, with Will Gregory, 3pm – 4pm
This webinar looked at appropriate exercise/activity to maintain and improve stamina, strength and flexibility. It is essential that the muscles are as efficient as possible to reduce strain on the heart and lungs. There were tips on exercising safely, as well as accessing online exercise resources, adapting your exercises, managing fatigue and pacing.
You can watch it on our YouTube Channel
21st June: ‘Living well with fatigue in people with Scleroderma’, with Lucy Reeve, 11am – 12pm
This webinar explored the influence of fatigue on peoples’ daily lives and how to use pacing, planning, prioritising and problem solving to manage daily activities more efficiently. Lucy also discussed how to adapt your environment to ensure it is helping you rather than hindering you.
Remember a loved one and raise awareness
Share a special message on our Scleroderma Awareness Month dedication page. Every memory shared helps continue the fight in raising awareness about scleroderma.
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Friday 17th September 2021
2021 Virtual Conference Round-Up
A series of talks took place throughout the day, covering areas of research funded by SRUK, advice on symptom management, and discussions about the future. This article offers a brief overview of each talk as a taster, and in the coming months they will be made available online.
Thursday 16th September 2021
Living with lung disease: Georgina's story
September is Pulmonary Fibrosis Awareness Month. Pulmonary fibrosis (PF) is also known as interstitial lung disease (ILD) and is the most common form of lung involvement in SSc. This can occur at any time, although early detection often leads to much better outcomes. This is Georgina’s story of living with lung disease, which has a dramatic impact upon her life.
Wednesday 1st September 2021
The OCTAVE Study: Scaling up our understanding of vaccine effectiveness in people living with autoimmune conditions
OCTAVE study reveals how effective COVID-19 vaccinations are in immunocompromised participants