Scleroderma

Overview

COVID-19 (coronavirus): Information for scleroderma patients

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

The Royal Free London 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.

Scleroderma is a relatively uncommon autoimmune condition whereby the body attacks its own tissues. The connective tissue underneath the skin and surrounding internal organs and vessels is affected, resulting in thickening of the skin and problems with internal organs and blood vessels. While there is currently no cure, most people with scleroderma lead a full, productive life.

Scleroderma workshops

Each year our department runs a number of workshops about scleroderma, you can find out more in the related links on the right.

Contact

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Find your ward

  • Royal Free Hospital

    Pond Street
    London 
    NW3 2QG

  • Clinical trials nurses

    020 7317 7544

  • Educational nurses helpline

    020 7830 2326

  • Kim Fligelstone

    020 7794 0500 ext 35131

  • NHS secretariat

    020 7830 2284

  • Pulmonary hypertension helpline

    020 7472 6354

  • Research office

    Tel: 020 7794 0432
    Fax: 020 7435 0143

  • Specialist pharmacist

    020 7794 0500 ext 33118

  • Vascular studies - Kevin Howell

    020 7472 6550

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