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The Centre for Rheumatology at the Royal Free 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.
pamela.yeomans@scleroderma-royalfree.org.uk

Many of you have raised concerns on COVID-19 and advice on this is changing rapidly as the situation evolves. An excellent website that you may find helpful is

https://www.versusarthritis.org/news/2020/march/coronavirus-covid-19-what-is-it-and-where-to-go-for-information/

British Society for Rheumatology has worked with NHS England to develop guidelines to identify individuals with rheumatic conditions considered to be at high risk of developing COVID-19. The key factors are immuno-suppressive medications (including high dose steroids and biologic agents) and other patient-related factors (age, pregnancy, medical conditions including cardiovascular diseases such as hypertension and diabetes, chronic bronchitis, asthma). This has enabled detection of those individuals considered as extremely vulnerable and requires shielding to protect them from coming into contact with coronavirus. Please note Hydroxychloroquine and sulfasalazine are not considered as high risk medications.

We are sending out an advisory letter to explain our position on scleroderma (please see attached link). We would advise that anyone with major organ involvement (lung fibrosis, pulmonary hypertension, cardiac involvement, significant gut involvement, kidney involvement in particular those on dialysis) and/or on immunosuppressive medications (including steroids) to be at particularly high risk and therefore should be shielded during the following 12 weeks (or longer as per advice from NHS England). Individuals without any of the above factors (including age above 70, non-scleroderma medical conditions including cardiovascular diseases) should self-isolate and maintain safe social distance.

At this time, you may feel overwhelmed by the lockdown. By embracing good mental health and well-being measures, you can protect yourself and those around you. Our colleague clinical psychologist Dr Mari Campbell has put together some handy tips on how you may manage this period of self isolation. This is attached here.

We will aim to update you with further advice.

2019 Christmas Newsletter

Raffle prize winners for 2019

Scleroderma Family Day - Saturday 02 May 2020 - Postponed to 2021
To mimimise risk to patients and families during the Covid-19 pandemic we are cancelling the 2020 Scleroderma Family Day. This is unfortunate but in line with our hospital policy of reducing potential exposure. It is disappointing but it would be difficult to celebrate the 25th Family Day in the way that it deserves. We will therefore postpone our anniversary Family Day to 2021. The raffle will still proceed, and winners will be contacted in due course.

17th International Workshop on Scleroderma Research
Boston, USA July 2021

Programme

14th International Workshop on Cardiovascular Biology
- Royal College of Physicians - 13 September 2019
Programme
Registration

 


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