Scleroderma, also called systemic sclerosis, is a complex and serious rheumatic disease that affects much more than the joints and muscles. Many patients develop scarring and inflammation in the blood vessels, lungs, kidney, and intestinal tract. This leads to problems that can be life threatening including pulmonary fibrosis, pulmonary hypertension, and renal failure.
The Royal Free Charity supports research, patient care, and education in scleroderma.
The Royal Free London NHS Foundation Trust’s (RFL) scleroderma clinical service, led by Prof Christopher Denton, is a world-renowned centre of excellence for care of patients with scleroderma and connective tissue diseases. It is the largest specialised clinic in UK for this uncommon but severe disease and offers ongoing clinical care to patients suffering from scleroderma and Raynaud’s phenomenon and undertakes clinical and basic scientific research into the root causes of these diseases. The department also boasts an active clinical trials unit which runs local, national, and international clinical trials. This provides patient’s access to cutting edge experimental treatments which are otherwise not available.
The recent and ongoing research funding from the Royal Free Charity is helping with all aspects of developing world class care at the Royal Free Hospital for scleroderma. It underpins vital research into the disease which harnesses the hard work of the clinical and research team and reflects enormous commitment from our patients and their families.”
Prof Chris Denton,
Centre for Rheumatology, Royal Free Hospital and UCL division of medicine
We are funding a study that could lead to a national self-care package for people with scleroderma who experience debilitating finger ulcers. These ulcers are very painful, often take a long time to heal, and can lead to complications that result in amputation or permanent tissue loss.
Experts at the Royal Free Hospital are collaborating with patients to co-design these self-care opportunities and develop improvements in care for patients with scleroderma experiencing these ulcers. We hope it will lead to a range of support measures to help patients dealing with distressing symptoms and help clinical teams who care for them to understand more about how to support them.
Thanks to supporters funding research, the scleroderma clinical service at the RFL has a better understanding of patients at most risk and are gaining insight into new disease mechanisms and evaluate the effectiveness of emerging drugs quicker.
Three drugs have already been approved for scleroderma associated lung fibrosis and the Royal Free Hospital has been one of the centres involved in key trials for all these agents.
Nicola Whitehill was diagnosed with diffuse systemic sclerosis scleroderma and Raynaud’s in 1997. She campaigns tirelessly to raise awareness of scleroderma and the funding needed for research to help find a cure.
Nicola Whitehall,
Scleroderma patient
Nicola Whitehill was diagnosed with diffuse systemic sclerosis scleroderma and Raynaud’s in 1997. She campaigns tirelessly to raise awareness of scleroderma and the funding needed for research to help find a cure.
“I will soon be celebrating my 26th year anniversary as a patient of the scleroderma clinical service at the Royal Free London NHS Foundation Trust. On reflection, this feels like a remarkable personal milestone to celebrate and share on Rare Diseases Day.
“For over 27 years, I have lived with the daily uncertainty as to when the symptoms of my disease will advance to the point of making medical intervention futile. At the time of my diagnosis in 1997, I would never have believed that this anniversary was possible, due to my aggressive symptoms at that time.
“Over the last two decades, the support I have received from this world-renowned centre has been simply exceptional. But more research is needed which is why I raise awareness of this disease, so we can one day find a cure and become a scleroderma free world.”
The Royal Free Charity supports research and patient experience for scleroderma as well as other conditions across RFL. To find out more about the work we do and the difference we make, subscribe to our emails.
