Scleroderma Awareness Month

Scleroderma Awareness Month in June is an opportunity for us to educate the public about the signs and impacts of scleroderma and to to highlight our resources and support for those in need

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#SayScleroderma

This Scleroderma Awareness Month, we unite worldwide to raise awareness, educate and ignite change about scleroderma; a rare, complex and life-altering disease that remains misunderstood by many.

SRUK’s mission is clear – to empower the public, urge early diagnosis, support those impacted and accelerate research to find better treatments and one day, a cure. Many healthcare professionals have never even heard of scleroderma. That’s why raising awareness is crucial. We want to ensure everyone affected receives the care, support, and attention they deserve.

This year, we’re asking you to share our powerful #SayScleroderma film to help generate vital funds for ground-breaking research. Featuring people from our SRUK community, this short film offers a snapshot of what is it like to live with scleroderma – the struggles, the hopes and the strength.

A graphic with #SayScleroderma hashtag featuring circle frames of three people from the SRUK community play video
A young woman with dark hair and wearing a royal blue v-neck top with a necklace

Mithi

"Getting my diagnosis when I did changed the trajectory of my life but saved my life as well. I hope the #SayScleroderma film goes some way to bring to light this curious and devastating condition.”

A woman with short brown hair, black glasses and a black long sleeve top with patterned sleeves

Dawn

"I am delighted to be part of the #SayScleroderma film and help raise awareness of the complexity of this condition. I hope it encourages people in pain to come forward for the referral they need."

A man with long dark hair and a light brown ribbed jumper

Alex

"My sister Giselle passed away from systemic sclerosis. I hope this film helps to make some difference in bringing to light the complexity of the condition and the toll it places on lives."

A young woman with red hair and a blue top leaning on a coffee table. She has an oxygen tube attached to her nose.

Beth

"It took five years for me to receive my diagnosis. I want to help raise awareness about the emotional and physical toll of delayed diagnosis and the irreversible damage it can cause."

Early diagnosis benefits

Early diagnosis of scleroderma is critically important in improving treatment outcomes. It also enhances the individual’s quality of life. Identifying the condition at an early stage can significantly mitigate the risk of complications and increase survival rates. Therefore, timely detection is a vital component of effective care.

When scleroderma is diagnosed early, those affected are better equipped to make informed decisions about their treatment options and lifestyle adjustments. This empowerment allows patients to actively participate in their healthcare journey. Consequently, it fosters a sense of control and confidence.

Early detection can open the door for people to participate in clinical trials for emerging therapies, providing access to cutting-edge treatments that may improve their prognosis. Timely intervention has the potential to delay the progression of serious complications associated with scleroderma, such as pulmonary fibrosis.

Our commitment to breakthrough research

SRUK funds vital, innovative scientific research into the causes, progression, and treatment of scleroderma. Our aim is to make life better for everyone living with the condition. We have invested over £1.7 million in research since 2016, but we can’t stop there.

Funds raised will support further research led by Maya Buch, Professor of Rheumatology and Director of Experimental Medicine at the Centre for Musculoskeletal Research, University of Manchester, who is using advanced scanners and implants to detect early signs of heart disease in scleroderma patients. The treatment is already saving lives and promises to transform patient monitoring.

Our vision is to understand the causes of scleroderma and use this knowledge to develop better diagnostics and treatments which will drive improvements in the quality of life of people with these conditions. The benefits of medical research are far-reaching and ultimately it helps everyone; from the thousands of people and families in the UK who are affected by scleroderma, to the health professionals who are involved in the management of these complex conditions.

–  Sue Farrington, CEO, SRUK

We hope through sharing our #SayScleroderma film, we’ll raise awareness and generate support. We also hope to reassure those with scleroderma that they do not have to face this alone.

How you can make a difference

Resources and support

Whether you’re newly diagnosed, on your journey to diagnosis, or a healthcare professional — we have resources to help. Visit our dedicated scleroderma pages for crucial info on signs, symptoms, diagnosis, treatments, and support options.

For further in-depth insights, explore the latest British Society of Rheumatology guidelines on systemic sclerosis.

#SayScleroderma stars

To Mithi, Tamikea, Ann, Beth, Dawn, Alex and Scott; valued and inspiring members of our SRUK community who took part in our #SayScleroderma film – a heartfelt thank you.

Scleroderma stories

We are incredibly grateful to those people who have shared their personal stories of living with scleroderma. Meet some of the brave and inspirational people from across our community.