Scleroderma patients' information day

Experts in the conditions scleroderma and Raynaud's Phenomenon are taking part in a special information day for patients, families and carers at the Royal National Hospital for Rheumatic Diseases in Bath (RNHRD) on Thursday 22nd February. This initiative is one of the many information days arranged throughout the year by the Patient and Public Engagement team at the Bath Institute for Rheumatic Diseases (BIRD).

The event aligns with February's Raynaud's Awareness Month in the UK to raise awareness of Raynaud's and early diagnosis of related autoimmune conditions such as scleroderma. Raynaud's is a common condition where the hands and feet become cold, the skin can change colour from white to blue and then red, and they become very painful upon warming up. In most cases Raynaud's is very manageable, however in some cases it can be the first sign or symptom of other autoimmune conditions, such as scleroderma. This is a rare chronic disease of the immune system, blood vessels and connective tissue and there are approximately 12,000 people diagnosed in the UK.

There are several different types of scleroderma that can vary in severity. There's no cure, but most people with the condition can lead a full, productive life. The symptoms of scleroderma can usually be controlled by a range of different treatments.

The RNHRD is a leading institution in the research and treatment of scleroderma and Raynaud's Phenomenon. Those attending the event will hear talks from RNHRD Consultant Rheumatologist Dr John Pauling and other members of the clinical team. Subjects include the latest methods used to diagnose scleroderma and how to predict its future course, a session on managing Raynaud's and the treatment approaches used to manage the symptoms and prevent it from getting worse.

Dr Pauling said: "Patient information days are a crucial component of the work we undertake at the RNHRD. They are particularly important for rare diseases such as systemic sclerosis which only affects approximately one in every 5000 people. They allow patients and their families to learn more about the condition, interact with members of the extended multi-disciplinary team, meet other people affected by the condition and learn more about caring for and treating themselves.

"Patients who attend the day will also have the opportunity to meet colleagues from our local charity for patients with autoimmune rheumatic diseases, the Bath Institute for Rheumatic Diseases, and the UK's national charity for patients with Scleroderma and related disorders, Scleroderma Raynaud's UK, who have supported the event."

The information day will also discuss the benefits of exercise and physiotherapy, how fatigue can affect scleroderma patients, and latest research into the different types of the condition.

If you have signs of Raynaud's or concerns about symptoms mentioned here please make an appointment to see your GP or visit www.sruk.co.uk to read more about the conditions.

ENDS

Notes to Editor:

• The Royal United Hospitals Bath NHS Foundation Trust provides acute treatment and care for a catchment population of around 500,000 people in Bath, and the surrounding towns and villages in North East Somerset and Western Wiltshire. The hospital provides healthcare to the population served by four Clinical Commissioning Groups: Bath & North East Somerset CCG, Wiltshire CCG, Somerset CCG and South Gloucestershire CCG.
• The Trust has 759 beds and a comprehensive range of acute services including medicine and surgery, services for women and children, accident and emergency services, and diagnostic and clinical support services.
• In 2015 The Royal United Hospitals NHS Foundation Trust was acquired the Royal National Hospital for Rheumatic Diseases (RNHRD) NHS Foundation Trust. The RNHRD treats patients from across the country offering services in rheumatology, chronic pain and chronic fatigue syndrome/ME.
• The RUH is changing - we have an exciting programme of redevelopment underway transforming our site and further improving the services we provide. The Trust is now working towards building a purpose built RNHRD and Therapies Centre and a new Dyson Cancer Centre. For more details visit: www.ruh.nhs.uk/fit4future

Download printable version