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Coronavirus, COVID-19 Public Health Advisory

[Reviewed July 1, 2020]

  • 5/1 UPDATED Statement COVID-19 (Coronavirus) Information & Recommendations
  • 4/24 Webinar Recording: "Balancing Your Immune System: A Special Webinar on Nutrition for Scleroderma Patients,"Elizabeth R. Volkmann, M.D., M.S., University of California, Los Angeles
  • 4/16 Webinar Recording: "Taking Care of Yourself at Home: Maintaining Hnd and Face Mobility," Janet Poole, Ph.D., University of New Mexico"
  • 3/27 Webinar Recording: "Staying Well During COVID-19," Tracy Frech, M.D., M.S., University of Utah
  • 3/21 Video Forum Recording "Scleroderma & COVID-19: A Conversation with the Experts"
  • 3/21 Statement "Important Information Related to COVID-19 and Juvenile Scleroderma
  • 3/20 Message from Scleroderma Foundation CEO, Robert J. Riggs
  • 1/4/20 Información Importante Traducida al Español Sobre COVID-19 y Esclerodermia Juvenil
  • 30/3/20 Español "COVID-2019 ("Coronavirus") Información y Recomendaciones del Comité de Asesoría Médica y Científica de la Fundación de la Esclerodermia

 

Your health and safety and that of every person affected by scleroderma is of paramount importance to the Scleroderma Foundation. The Foundation takes very seriously the threat the coronavirus (COVID-19) presents to individuals living with scleroderma, who are immuno-compromised. As the virus spreads in the United States, we wish to provide you with reliable information from qualified sources to guide you in your decision making regarding support group meetings, chapter events, and the activities of daily life.

The Foundation is guided by the directives and recommendations of the Centers for Disease Control & Prevention (CDC), state departments of public health, and the Foundation's Medical & Scientific Advisory Board.

For your reference, the department of public health for each state is listed at the end of this page.

Many municipalities and states have issued prohibitions against gatherings ranging in size from 10 people and larger. Schools and government offices are closing for extended periods of time. Please consult with public health officials in your community to learn the current status of public gatherings and heed their recommendations.

Meetings and Events

  • In consultation with the Leadership Committee of the Scleroderma Foundation's Medical & Scientific Advisory Board, chapters and support groups are strongly urged to suspend, cancel, or reschedule meetings and events from now until the end of April 2020. These activities include indoor meetings such as in-person support group meetings, patient education events, and fundraisers. (Please note that fundraising may be easily done online.)
  • This action is in line with recommendations from the U.S. Centers for Disease Control & Prevention and our own Medical and Scientific Advisory Board that encourage—and in some municipalities, mandatinge— social distancing. In mid-April, the Foundation will assess events that are scheduled to take place in May, June, and beyond.
  • Support group leaders should consider the option of using virtual meeting tools, such as Zoom.com, or telephone conferencing during this period of limited public gatherings.

National Patient Education Conference and Kids Get Scleroderma, Too!

  • To protect the health of individuals who have scleroderma, the Scleroderma Foundation has canceled its 2020 National Patient Education Conference and Kids Get Scleroderma, Too! conference, which were both scheduled to take place July 17-19 in Bellevue, Washington.
  • This decision was taken after thorough review of information available through public health agencies, primarily the Centers for Disease Control & Prevention and the State of Washington Public Health Department.
  • In lieu of the eagerly anticipated in-person educational conference and the unique and essential personal connections it provides; the Scleroderma Foundation is developing creative, alternative programming to be announced later.
  • A full refund of conference fees was given automatically between March 16 and 20 to all who were registered to attend.
  • Hotel room reservations will not be canceled automatically. If you reserved a room, you must contact the hotel independently to cancel the reservation to avoid financial obligation.
  • We are pleased to announce that the conference will return to Bellevue, Washington in 2022. The location for the 2021 National Confeence and KGS2 will be announced later this year.

Personal Precautions

Rod of Asclepius Medical SymbolRemember, common flu precautions are also recommended by public health officials to protect against the coronavirus.

  • Wash your hands with hot, soapy water for at least 20 seconds.
  • Cover your mouth, ideally with an elbow, when you cough or sneeze.
  • Social distancing. Limit your activity in public as much as possible. When in public, keep your distance from others; six to ten feet is best; three feet at minimum.
  • Get a flu shot. It won't prevent coronavirus, but it will help keep you out of the doctor's office with the flu.
  • Use your sick days. If you're not feeling well, stay home and get better.

The CDC is the best primary source for information on the coronavirus:

Health Resources for Respiratory Complications:

Video Presentations on Scleroderma & COVID-19

"Balancing Your Immune System: A Special Webinar on Nutrition for Scleroderma Patients,"Elizabeth R. Volkmann, M.D., M.S.(4/24/20)

Taking Care of Yourself at Home: Maintaining Hnd and Face Mobility," Janet Poole, Ph.D., University of New Mexico"(4/16/20)

"Staying Well During COVID-19," Tracy Frech, M.D., M.S. (3/27/20)

Video Forum: "Scleroderma & COVID-19: A Conversation with the Experts" (3/21/20)

Departments of Public Health:

National Association of County & City Health Officials
(Links to local health officials across the United States)

Alabama | Alaska | Arizona | Arkansas | California | Colorado | Connecticut | Delaware | Florida | Georgia | Hawaii
Idaho | Illinois | Indiana | Iowa | Kansas | Kentucky | Louisiana | Maine | Maryland | Massachusetts | Michigan
Minnesota | Mississippi | Missouri | Montana | Nebraska | Nevada | New Hampshire | New Jersey | New Mexico
New York | North Carolina | North Dakota | Ohio | Oklahoma | Oregon | Pennsylvania | Rhode Island
South Carolina | South Dakota | Tennessee | Texas | Utah | Vermont | Virginia | Washington | West Virginia
Wisconsin | Wyoming