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Additional information on COVID-19 and scleroderma


August 1, 2021

Navigating the Ongoing Pandemic

Dear Foundation Members, Friends, and Supporters:

Mary J. Wheatley, IOM, CAE, Chief Executive Officer
Mary J. Wheatley, IOM, CAE
Chief Executive Officer
Over the past 16 months, our community has faced enormous changes and challenges caused by the global pandemic. As we have learned more about the virus, we have endeavored to bring you timely updates and information from our Medical & Scientific Advisory Board (MSAB) and government resources.

While everyone 12 years of age and older is now eligible to get a free COVID-19 vaccination, it’s important to weigh emerging knowledge about the virus, vaccines, and evolving safety guidance with the risks for those with scleroderma/systemic sclerosis.

Guidance from the Scleroderma Foundation Medical & Scientific Advisory Board’s Leadership Committee

The Scleroderma Foundation’s MSAB Leadership Committee agrees with the CDC guidelines for those who have a condition or are on medications that weaken the immune system. Recent studies suggest that immunocompromised people, particularly those on mycophenolate mofetil, may have had less than 50% effectiveness of the vaccine. Thus, they strongly recommend that people diagnosed with scleroderma/systemic sclerosis who are receiving immunosuppressive therapies such as mycophenolate mofetil and rituximab and those who live with them should continue to wear face masks, practice social distancing, avoid crowds and poorly ventilated indoor spaces, and use diligence in frequent hand washing.

Updated Guidelines for Mask Wearing from the CDC

The Centers for Disease Control and Prevention (CDC) updated their recommendations for mask wearing as a precaution against COVID-19 on July 27, 2021. The updated guidance for fully vaccinated people based on new evidence on the Delta variant recommends wearing a mask indoors in public if you are in an area of substantial or high transmission.

The CDC guidelines further state:

If you have a condition or are taking medications that weaken your immune system, you may NOT be fully protected even if you are fully vaccinated. Talk to your healthcare provider. Even after vaccination, you may need to continue taking all precautions. All precautions include:

  • Wear a mask that covers your nose and mouth to help protect yourself and others.
  • Stay 6 feet apart from others who do not live with you.
  • Get a COVID-19 vaccine when it is available to you.
  • Avoid crowds and poorly ventilated indoor spaces.
  • Wash your hands often with soap and water. Use hand sanitizer if soap and water are not available.

*In general, people are considered fully vaccinated:

  • 2 weeks after their second dose in a two-dose series, such as the Pfizer or Moderna vaccines, or
  • 2 weeks after a single-dose vaccine, such as Johnson & Johnson’s Janssen vaccine.

If you do not meet these requirements, regardless of your age, you are NOT fully vaccinated. Keep taking all precautions until you are fully vaccinated.

As the leading patient advocacy organization for the scleroderma community, the Scleroderma Foundation takes seriously its responsibility to act in an abundance of caution by continuing to offer programs, services, and special events in virtual formats until the scientific community has more data on the efficacy of vaccines for immunosuppressed individuals.

Although there are now fewer restrictions on gatherings, there remains an inherent risk. As a community we want to ensure that we are keeping each other safe while actively assessing our policies and practices. While some outdoor walks and events will resume later this summer and fall, the Foundation does NOT recommend resuming indoor meetings and support groups. We encourage you to view the full CDC guidelines at: https://www.cdc.gov/coronavirus/2019-ncov/hcp/infection-control-after-vaccination.html.

Thank all of you for your continued support of the Scleroderma Foundation’s mission. We owe a huge debt of gratitude to our chapter and support group leaders and volunteers, as well as to our members and donors who continue to invest in our mission of hope.


Mary J. Wheatley, IOM, CAE
Chief Executive Officer