COVID-19 Update: September 2022

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The ICC have updated their Covid-19 guidance for people with FOP after a meeting of the members.

The following guidance also explains about the Covid-19 vaccine. The current advice is that “the ICC is unable to recommend for or against the Covid vaccine for patients with FOP.  The decision to take a vaccine is a personal one and based on the balance of risks and benefits, and this should be discussed with your medical team.”

These guidelines are written with an international viewpoint.  It is advised that the current NHS guidance for the UK is also taken into consideration, especially in light of the new strain of Covid-19 which is believed to spread more quickly.

For patients, families and carers, please SCROLL DOWN THIS PAGE TO READ THE ADVICE from the International Clinical Council for FOP.

Read the updated ICC Guidelines here. 

For up to date NHS advice on Covid-19, please visit:

The Coronavirus (COVID-19) pandemic continues to pose a significant risk to the population worldwide with new variants of SARS-CoV-2 virus are emerging.

There have also been reports on non-genetic heterotopic ossification developing in NON-FOP patients with COVID-19 infections. 

The ICC recommends that people living with FOP to continue to follow strict precautionary measures to prevent infection from SARS-CoV-2, the virus that causes the COVID-19 illness.

To download the latest ICC Covid Guidelines click here.

May 2022

The recommendations are changing rapidly, are country specific and based on COVID-19 vaccine availability:

The ICC does not provide recommendations on whether a patient with FOP should or should not receive a COVID vaccine.

The decision to take a vaccine is a personal one and based on the balance of risks and benefits, and this should be discussed with your medical team. ICC continues to recommend that COVID-19 vaccines be administered that same route that it was approved (i.e. intramuscular).

Additional information about COVID-19 and COVID vaccination in patients with FOP is now published.
* Amongst 15 FOP patients who received intramuscular COVID-19 vaccination. Most common symptoms were pain/soreness, tiredness and swelling. 1 out of 15 developed a flare up and none were hospitalized.
* Amongst 10 FOP patients with COVID-19 infection. Most common symptoms were fatigue, loss of taste or smell and cough. 2 out 10 FOP patient developed flare ups and 1 patient was hospitalized.

Vaccines are now generally available for children age 5 or over. ICC does not provide recommendations on whether a patient with FOP should or should not receive a COVID vaccine

ICC does not provide recommendations for or against the booster vaccination, but boosters should be considered if you completed vaccinations previously and are in a high risk area. Please consult with your medical team prior to receiving the booster to discuss if a booster is appropriate and safe.

Patients with FOP are at high risk of complications with COVID-19 infection and should discuss with their medical team if use of monoclonal antibodies or anti-retroviral medications would be beneficial, in the event of a SARS-CoV2 infection.
* Monoclonal antibodies are given intravenously and are approved for adults and pediatric patients (≥12 years of age weighing ≥40 kg). Those innervations should be started as early as possible and before 10 days of symptoms onset.
* Anti-retrovirals are pills that have been approved. These should generally be administered within 5 days of symptoms onset.
* Availability and recommendations of the use of these treatments are rapidly changing and country specific. Some of these therapies may not work against strains prevalent in a particular region. Please consult with your local medical team for recommendations
* Discuss with your doctors to make sure there are no medication interactions

Thank you to all of our prior participants who have contributed clinical data about FOP and COVID/SARS-CoV2 infection. The studies at UCSF have now concluded and are published here:
Social and clinical impact of COVID-19 on patients with fibrodysplasia ossificans progressiva | Orphanet Journal of Rare Diseases | Full Text (

Masking continues to be an important component of controlling the spread of SARS-CoV-2. The ICC strongly recommends the use of tight fitting N95, KN95, or KF94 masks whenever possible to protect the wearer from infection by SARS-CoV-2. If these masks are not available or uncomfortable, then wearing a 3 layer surgical mask would be the next best choice.

The ICC is aware of a recent publication suggesting that the use of subcutaneous needles could still induce adequate vaccine response. However, this study likely delivered the vaccine via a shallow intramuscular route. Furthermore, there are multiple reports in the literature of severe reactions to subcutaneous injection of the COVID vaccine. Efficacy of subcutaneous delivery of a COVID vaccine remains unproven. Therefore, the ICC continues to recommend following the manufacturers’ directions for vaccination and NOT taking intramuscular COVID vaccines by the subcutaneous route.

Download the ICC Covid guidelines here.

Important! If you decide to take the COVID vaccine or booster, the ICC recommends:

Discuss your plans with your doctor. Review any potential allergies or prior reactions like anaphylaxis that you should consider before taking the vaccine.

Take the vaccine via the recommended route and dose (i.e. intramuscular (IM) for the currently available vaccines). Safety and efficacy of taking an IM vaccine through the subcutaneous route is not known, and could cause a more unexpected inflammatory responses or poor immune reactions, and is currently not recommended.

If possible, take the vaccine in a location that is already fused, as the vaccines all appear to induce some local site reaction (arm pain and swelling). For example, if your left hip or right shoulder are fused, you should use the muscle around those sites.

Patients with FOP should be flare free for at least 2 weeks prior to receiving the vaccine.

Have the injection done by an experienced nurse, physician, or pharmacist.

Use the shortest needle available (this varies with site). The clinician should be aware that patients with FOP may have hidden HO and thinned muscle at the site of the injection. Avoid injecting directly next to existing HO bone if possible.

Prior to the vaccination, have ibuprofen or acetaminophen available. Also, have a course of prednisone for flares available.

Make sure your physician is familiar with the ICC Treatment guidelines, specifically on vaccinations and flare management. Guidelines – International Clinical Council (ICC) on Fibrodysplasia Ossificans Progressiva (FOP) ( Notify your physician you plan to do the vaccine, and when.

On the day of the injection:

Your local team may not allow you to take ibuprofen or acetaminophen prior to the injection (this is because they may screen for COVID symptoms first).

After you receive your injection, there may be a brief observation period.

After that is completed, take ibuprofen (2 to 3 times/day) or acetaminophen (2-3 times/day) following the label instructions, for the next 48 hrs, regardless of your symptoms.

Rest and stay hydrated.

In the event of a flare, contact your physician for guidance. You may need to do a short course of prednisone, but this needs to be balanced with the immunosuppressive effects of steroids. The usual flare dosing is prednisone 2 mg/kg/day up to 100 mg, for 4 days; your physician may recommend starting at a lower dose, depending on your symptoms.

Even if you take the vaccine, you still need to continue physical distancing, wearing masks, and appropriate hand washing

The ICC can’t guarantee that these steps will “work” to prevent complications. All medications and treatments have risk, so it is important to discuss your specific situation with your doctor as you decide whether to take the vaccine or not.

Make sure that you complete the full immunization regimen recommended (ie do both doses if the vaccine recommends 2 doses)

Discuss with your physician if you should do a booster and if that is appropriate for you, such as to cover local SARS-CoV2 variants. This is an area of active investigation so will need to be updated as the ICC receives more information.

Important! How does the development of a vaccine change things?

Recent developments of a vaccine provide long term hope. However, the impact of the vaccine on the pandemic will take quite some time to manifest. Many types of vaccines are being tested and new variants of SARS-CoV-2 virus are emerging and so this is a rapidly changing field.

Vaccines are currently not available for children younger than 5 years or with subcutaneous delivery. These are actively being studied, and will be added to the guidelines once available.

At this time, the ICC does not recommend vaccination for children younger than 5 years due to the lack of safety and efficacy data.

The exact duration of immunity conferred by the vaccines is unknown but does not seem to be lifelong.

At this time, ICC does not provide recommendations for or against vaccination for patients with FOP older than 5 years of age. The specific risks and benefits should be discussed with your physician.

The ICC recommends that FOP family members and caregivers be fully vaccinated for SARS-CoV2 if safely available for them.

Vaccinations can take 2+ weeks to show any efficacy, so there is no protection immediately after vaccination. In addition, vaccines do not confer absolute immunity to the SARS-CoV-2 virus, and may not have activity against all forms of the SARS-CoV-2 virus. Anyone who receives a vaccine should still continue with masking, hand hygiene, and physical distancing.

This information is rapidly evolving. Please discuss with your local care providers regarding benefits and risk of any locally approved vaccines and boosters.

It’s very important to maintain social distancing and wearing a mask when around members outside your household

Additional updates will be shared as new information becomes available.

Recommendations if a patient with FOP or caregiver tests positive for SARS-CoV2

Notify your primary care physician to help coordinate care

Follow your local guidelines for isolation/quarantine and the needed durations and procedures.

Everyone, including the person with the positive SARS-CoV2, should wear a mask at all times to avoid transmission.

Patients who are negative for SARS-CoV2 but have similar symptoms should be tested for influenza.

New! Patients with FOP are at high risk of complications with COVID-19 infection and should discuss with their medical team if use of monoclonal antibodies or anti-retroviral medications would be beneficial, in the event of a SARS-CoV-2 infection. The main reason for treatment would be to reduce respiratory complications, as patients with FOP are at high risk of breathing complications and are difficult to intubate. However, access to these medications may be limited in your area. Please discuss with your physician if these medications are an option and appropriate for you.

*Monoclonal antibodies are given intravenously and are approved for adults and paediatric patients (≥12 years of age weighing ≥40 kg).

*Those interventions should be started as early as possible and before 10 days of symptoms onset.

* Anti-retrovirals are pills that have been approved for treatment of COVID-19. These should generally be administered within 5 days of symptoms onset.

* Availability and recommendations of the use of these treatments are rapidly changing and country specific. Please consult with your local medical team.

* Discuss with your physician about any potential medication interactions prior to starting anti-viral therapies.

This information is from previous guidance:

Please follow the advice of your local health authority for patients in the high risk group (similar to immunocompromised).

Preventing the spread of SARS-CoV-2 (the virus that causes COVID-19) is critical.

NHS England

World Health Organization (WHO) information

Centers for Disease Control (CDC) information

SARS-CoV-2 is a new type of coronavirus that can cause the COVID-19 disease. COVID-19 can affect your lungs and airways. The most common symptoms of COVID-19 are fever, dry cough and tiredness.  Some patients may have shortness of breath, aches and pains, loss of taste and smell, nasal congestion, runny nose, sore throat or diarrhoea. In some, the disease can be severe and life threatening.  The best way to prevent illness is to avoid exposure to this virus.

How is SARS-CoV-2 spread?

People can catch the SARS-CoV-2 virus from others who have the virus. SARS-CoV-2 is highly contagious. The disease can spread from person to person through small droplets from the nose or mouth which are spread when a person infected with SARSCoV-2 (even if asymptomatic) coughs, sneezes, or is talking. Data also suggest that the virus can be air-borne. Transmission is highest in indoor settings.

It is possible for a person infected with SARS-CoV-2 to be asymptomatic or have minimal symptoms, but can still spread the virus.

General recommendations:

* Avoid touching your eyes, nose, or 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 in touch with others by phone or email. You may need to ask for help from friends, family, neighbours, community health workers, etc. if you become sick.

* Clean and disinfect frequently touched objects and surfaces (including iPads, phones,laptops) using a regular household cleaner or wipe.

* Rest, stay well hydrated, and self-isolate.

Take steps to prepare for possible infection:

*Contact your healthcare 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 your closest FOP expertise center (See the ICC website for a list of current centres). You may also contact:

Zvi Grunwald, M.D.
The James D. Wentzler Professor and Chairman Emeritus
Department of Anesthesiology
Thomas Jefferson University
Philadelphia, PA. USA
Tel: 215-955-6161
Cell: 215-206-7362
Fax: 215-923-5507

What should I do if I think I have been exposed to SARS-CoV-2?

If you have symptoms that resemble COVID-19, you should immediately self-isolate.

Contact your primary care doctor immediately for guidance. Where available, you should be tested for both the influenza virus and the SARS-CoV-2 virus.

Follow established local guidelines for positive and negative results.

Should you get tested for COVID-19?

Please contact your local healthcare provider if you are having any symptoms suggestive of COVID-19 to discuss testing.

We do recommend that you and your care-givers get COVID-19 testing if symptomatic.

As far as we are aware, no FOP patients have developed a flare-up after carefully taken nasal swab for COVID-19 testing.

Should I return to work/school?

We recommend that you reach-out to your local healthcare providers and employers/schools to discuss when and if it would be safe for you to return to work. Follow local guidelines.

Several factors need to be taken into consideration (your current health status and current medications, local COVID-19 cases, work and school environment, transportation considerations).

You will need to continue to maintain social distancing, wear a mask, and use frequent hand hygiene. Also recommended is that you avoid large gatherings and indoor events.

Please remember, the recommendations are evolving rapidly; the ICC will do their best to update you on a regular basis.

FOP Friends will keep these guidelines updated as and when the ICC release new guidance.

Explaining Covid-19 to children

Probably best known as the illustrator of classic children’s books such as ‘The Gruffalo’ and ‘The Room on the Broom’, Axel Scheffler has teamed up with some doctors, teachers, a mental health professional and Nosy Crow publishers to produce a book to explain Covid-19 to children.  The book is beautifully illustrated and is a useful tool for parents to share with children to address some of the many questions and concerns children may be having at present.

At the back of the book there are some links to other websites that can offer you and your family support at this challenging time.

The book is free to download: