International Clinical Council on FOP Issues COVID-19 Precautions for FOP Families

Coronavirus (COVID-19) Precautions for FOP Families 
March 16, 2020

In light of the continued and rapid spread of Coronavirus (COVID-19), ICC has the following recommendations for the people living with FOP and their families and caregivers. People living with FOP are a high risk of severe illness with COVID-19 and it’s paramount to prevent infection and self-isolate. Prednisone and other immunosuppression medications can further increase that risk. The recommendations are changing rapidly and are country specific.

General guidelines recommended by the ICC:

  • Avoid gatherings, Austria has limited gathering to no more than 5 people.
  • Avoid close contact with people who are sick with any cold symptoms or recent travel in the past 2 weeks.
  • If you are in clinical trial, please communicate with your site for local recommendations.
  • Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe, including ipad, phone, laptops.
  • Rest, stay well hydrated and self-isolate.
  • Wash your hands often with soap and water for at least 20 seconds.
  • Have personal aides or caretakers wash their hands soap and water for at least 20 seconds before assisting you.
  • Avoid touching your eyes, nose, and mouth.
  • Avoid high-touch surfaces in public places – elevator buttons, handles, handrails, handshaking, etc. Use a tissue or your sleeve to cover your hand or fingers if you must touch something.
  • Wash your hands after touching surfaces in public places.
  • Cover your cough or sneeze with a tissue, then throw the tissue in the trash.
  • Stay home as much as possible.
  • Stay in touch with others by phone or email. You may need to ask for help from friends, family, neighbors, community health workers, etc. if you become sick.
  • The concern with NSAIDs (non-steroidal anti-inflammatory drugs) and ACEi (angiotensin-converting enzyme inhibitor) can increase risk of COVID-19 infection and severity of illness is still evolving and unclear, please contact your health care provider before stopping or starting medications. At this time, the most important thing is to prevent infection and self-isolate.

Take steps to prepare for possible infection:

  • Contact your health care provider to ask about getting an extra supply of your regular prescription medicines to have on hand if there is an outbreak of COVID-19 in the community and you need to stay home for a long period of time.
  • Be sure you have over-the-counter medicines and supplies (tissues, etc.) to treat fever and other symptoms. Most people will be able to recover from COVID-19 at home.
  • Have enough household items and groceries on hand so that you will be prepared to stay at home for an extended period of time.
  • For respiratory concern or airway management questions please contact:

Zvi Grunwald, M.D.

The James D. Wentzler Professor and Chairman Emeritus

Department of Anesthesiology

Thomas Jefferson University

Philadelphia, PA.  USA

Tel: +1 215-955-6161

Cell: +1 215-206-7362

Fax: +1 215-923-5507

Email: [email protected] 

The recommendations are evolving rapidly; we will do our best to update you on a regular basis.

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