COVID-19 presents important challenges for people affected by Scleroderma. This page provides available resources and pertinent information for Scleroderma patients, as well as initiatives to support the organization and patients during these difficult times.
A reminder for those of us with scleroderma. At the first sign of mild symptoms or a positive COVID test, contact 1-888-268-4319 or the emergency department of your nearest hospital. You may be eligible for treatment but it must be taken with in 5 days of the start of symptoms. Have a list of all your medications. Tell them you have scleroderma and any lung complications such as interstitial lung disease (ILD), pulmonary hypertension (PH), or pulmonary arterial hypertension (PAH). Tell them any immune-system suppressants you have been prescribed, such as azathioprine, cyclophosphamide, hydroxychloroquine (Plaquenil), infliximab (Remicade), methotrexate, mycophenolate, tacrolimus, or tocilizumab (Actemra). This is not a full list so please discuss the drugs that you are on with the medical professionals.
If you can, contact your primary care doctor or the Rapid Access Clinic at VGH, ASAP. Those with PAH may want to contact the PAH clinic.
For more info, visit the BCCDC for information on the treatments available. http://www.bccdc.ca/health-info/diseases-conditions/covid-19/treatments
CLICK HERE to see the BCCDC website.
With the approval of two vaccines in Canada for Covid-19, there are many questions about the safety and efficacy of the vaccines for people living with scleroderma.
Updated information re COVID-19, the emerging variants and vaccination as it relates to scleroderma patients.
BC Gov LInk to Vaccine Rollout Registration
Dealing with COVID & Vaccines
WATCH THE VIDEO:
A Canadian Scleroderma Series Panel Discussion
The discussion was held on February 11, 2021 and now the video is available to you.
Dr. Janet Pope – Dr. Mark Larche – Dr. John Varga – Maureen Sauve
Dr. Brett D. Thombs
American College of Rheumatology
One item in the video was reference to the American College of Rheumatology Guidance Related to the Use and Timing of Vaccination and Immunomodulatory Therapies in Relation to COVID-19 Vaccination Administration in Rheumatoid Arthritis Patients
You can have a look at COVID-19 Vaccine Clinical Guidance Summary
NOTE, PLEASE MAKE SURE YOU DISCUSS THIS WITH YOUR DOCTOR.
SPIN Series: Living with Covid
Thanks to the success of the SPIN-CHAT (COVID-19 Home-isolation Activities Together) Program and in response to public demand, we decided to offer weekly webinars of our educational segments! Starting February 2nd and held every Wednesday 4-5 PM PST thereafter, for a total of 11 webinars. Take a look at our presentation line-up below:
|Mar 03||Home activity engagement||Laura Bustamante|
|Mar 10||Worry management (Part 2)||Ghassan El-Baalbaki|
|Mar 17||Relaxation techniques (Part 2)||Ghassan El-Baalbaki|
|Mar 24||Adapted home exercise (Part 2)||Kelsey Ellis & Delaney Duchek|
|Mar 31||Home activity engagement (Part 2)||Laura Bustamante|
|Apr 07||Worry management (Part 3)||Ghassan El-Baalbaki|
|Apr 14||Adapted home exercise (Part 3)||Kelsey Ellis & Delaney Duchek|
For the first session REGISTER HERE
COVID-19 presents important challenges for people affected by Scleroderma. This page puts together available resources and pertinent information for Scleroderma patients, as well as the initiatives to support the organization and patients during these difficult times.
Scleroderma and the COVID vaccine.
Scleroderma Foundation in the United States pulled together a talented group of experts and have provided a page with information and recommendations on COVID-19 vaccines. Read what some of the top experts in the world have to say: READ HERE
Answers to your questions!
Immunosuppression is a risk factor, and having an interstitial lung disease (ILD) or Scleroderma without an ILD puts you at a slightly higher risk.
BC Government Covid-19 Information
British Columbia division of the Canadian Mental Health Association
You have questions? Please view this videoforum captured on March 21 2020.
« Scleroderma & COVID-19 : A conversation with the experts »
Participants were invited to submit their questions concerning COVID-19 and Scleroderma in advance via an online Qualtrics questionnaire or to ask their questions directly to a team of five experienced panelists. Mrs. Maureen Sauvé, Dr. Janet Pope, Dr. John Varga, Dr. Don Sheppard and Dr. Brett Thombs. By typing them into the discussion section of GotoMeeting.
You can access a transcript of the questions and answers here!
Make the difference!
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