Do not make it easy!
Scleroderma is a rare autoimmune disease of complex and yet not fully understood origin which affects all the skin and connective tissue in our bodies.
It affects about 2500 to 3000 people in Portugal and it is estimated that between 1-5 people for every 1000 people in the world suffer from this disease (2017 USA and UK data).
Its signs and symptoms vary, as it involves different organs (hence the name Systemic Sclerosis) and as such, it can also affect the lungs.
Therefore, Systemic Sclerosis or Scleroderma patients, in addition to being subject to chronic respiratory diseases, can also suffer from severe complications caused by acute respiratory infections, such as pneumonia.
These are times of extra care.
In the current health scenario in the country and in the world, it is imperative not to facilitate and to continue the medication prescribed by our medical specialist, which is adjusted to each one of us. It is also important to contact the doctor in case something feels strange or out of the ordinary as well as to exercise regularly and to pay special attention to what we eat.
Bearing in mind the fragility of the immune system not only due to the disease itself but also to the standard treatment of this pathology, Scleroderma patients must protect themselves from any severe respiratory diseases such as pneumonia or the flu, mainly through vaccination.
Currently, there is no indication that the anti-inflammatory therapy should be stopped.
Each individual should try to understand and evaluate if they are experiencing any of the symptoms related to the Covid-19 (fever, cough, muscle pain, loss of smell or taste or shortness of breath) that they have experienced before or if the symptoms are new and different. They must note that the fever and shortness of breath in the Covid-19 pandemic are more acute than usual.
Without a vaccine or effective treatment against the new coronavirus, it is of high importance to follow the safety and hygiene recommendations and guidelines by the health authorities and the World Health Organisation.
The watch word is: “Do not make it easy!”
Maria José Guimarães
Coordinator of the Pneumology Service of the Luz-Guimarães Hospital
news & events
Are you living with diffuse scleroderma?
Would you like to be involved in a clinical study testing a new investigational drug for use in Diffuse Scleroderma?
If so, you may be eligible to take part in the DECODE Scleroderma Study
FESCA is proud to be a partner of a the new This is Living campaign launched last month by Boehringer Ingelheim.
We are happy to share with you our latest newsletter. Read about World Scleroderma Day 2021, projects, our next world congress and more.