Care4BrittleBones aims to improve the quality of life of people with Brittle Bones Disease

Coronavirus / COVID-19

Corona Covid 19th Update May 19th

The new corona virus (COVID-19) raises many questions for people with Osteogenesis Imperfecta (OI) worldwide. There is currently no knowledge specifically about the impact of Corona virus on people with OI. The information regarding the currently spreading corona virus and the symptoms caused by this virus is constantly updated.

The information provided on this page has been updated completely on <latest update: 09 May>.

The source of the information is clearly indicated in the text and can be found on the bottom of this page.

Video Webinar Dr. S. Sandhaus and Dr. F. Glorieux (organised by OIF)

On Thursday, March 19, 2020 Dr. Robert Sandhaus (pulmonologist at National Jewish Health in Denver, CO) and Dr. Francis Glorieux (Chair of the OIF’s Medical Advisory Council) hosted a video call to provide information about COVID-19 and how we, as an OI community, can keep safe and well during this time. If you were unable to attend, please watch the video.

To download the full transcription of this recording, click here.

Transcript by Mira Thompson, click here.

**NEW** COVID-19 Q&A: Mental Health and Self-care

On Thursday, March 26, 2020 at 1:00 p.m. ET, the OI Foundation hosted a video meeting to connect OI community members with Dr. Kara Ayers (Associate Director of the University of Cincinnati Center for Excellence in Developmental Disabilities) and Dr. Michelle Fynan (Online Instructor at LA Film School, Online Coach and Therapist) to discuss mental health and self-care considerations during the COVID-19 pandemic.

Click here to view the transcription of this recording 

**NEW** COVID-19 Q&A: Orthopedic Perspectives on OI during the COVID-19 Pandemic with OI experts

On Thursday, March 26, 2020 at 5:30 p.m. ET,  Jill Flanagan, MD (Children’s Healthcare of Atlanta), Jeanne Franzone, MD (Nemours/Alfred I. duPont Hospital for Children), and Maegen Wallace, MD (Children’s Hospital & Medical Center, Omaha) joined OI community members on a video meeting to discuss orthopedic perspectives on OI during the COVID-19 Pandemic.

Click here to view the full transcription of this recording.

TRACKER PEOPLE WITH OI AND CORONA:

Number of people with OI who have a formal diagnosis of the new Corona virus:

4 people with OI have been formally diagnosed with Corona / COVID-19

Please inform us of people with OI who have been confirmed to be infected, so that we can stay connected, support the knowledge exchange across health care providers and learn quickly. All information provided remains anonymous unless explicitly agreed with you otherwise.

Currently we are aware of 4 individuals with OI, 1 in Europe and 3 in the Americas who have been formally diagnosed with Corona/COVID-19. We are consulting with OIFE, OIF and our worldwide healthcare provider network on a regular basis.

If you would like to report on someone with a confirmed Corona diagnosis, please flag to communications@care4brittlebones.org

FREQUENTLY ASKED QUESTIONS:

Daily life, exercise and mental health

**UPDATED** I feel very concerned and really anxious. What can I do?

Many people with OI feel what you are feeling. Dealing with the uncertainty and thinking about the impact of COVIT-19 may have on your own life, to the life of people you care for and the world around us can get too much at times. This is a good time to take your mental health seriously. We don’t know how long this situation will last, so we recommend to start early when you feel the emotions and concerns are taking over. Maybe even before you start having these thoughts and feelings: start with it straight away! There is nothing to loose and a lot to win!
Consider the following recommendations:

  • Take a break from information: Take a break sometimes from news channels, newspapers and social media. Try not to concentrate on it. (6) You can limit it to 1 check per day for a few minutes and focus on the most important recognized provider of information in your country. In every country there is usually a coordinating institution that will ensure you have the best possible information for your country. (8)
  • Enjoy: Enjoy your time with family that you might have not had if you had to work (6).
  • Talk: Speak to other people about your worries and allow them to help you. You can “talk” to others Face 2 Face, but also on the phone and through social media.
  • Support across the OI-Community: Participate in some of the webinars, virtual concerts or “virus workouts” and other activities organized by Care4BrittleBones, OIFE or OIF!
  • Focus: Guide your thoughts and feelings. Whatever you focus on in your mind will emotionally grow. If you focus on negative news and the heavy impact of Corona, you will feel this more. If you guide your thoughts to the  positive examples of how people support each other, the tremendous work of healthcare providers and the many good things in your life (food, wine, nature, anything you enjoy!) you can “grow” the good feeling that come with it.  Practically this can be done by keeping a diary of good things and nice moments, painting things that are beautiful, pull out some old photos and hang them up visibly, engaging in spiritual exercises like praying, exercise mindfulness, do meditation.
  • Physical exercise: You can trigger a positive response from your body by exercising. This will also support your immune system . (8)
  • **NEW** New routines: Some people find it hard that all their usual routines have been disrupted.  So there’s some things that we can kind of re-create in our everyday routines, and I think this is a little bit easier to do for children.  I know with our three kids, we are trying to think of ways to structure their days in somewhat similar ways to what they used to be, because we know that that can offer a sense of security, and it can help with things like anxiety.  And so doing that for yourself, too, may be really helpful.  If you typically have kind of a wind down routine that you went through after you got home from school or work or before you went to bed, it’s important to still try to keep those things.  It can feel a little artificial at first, but it can really be helpful for your mental health in the long run. (9)

**NEW** I don’t worry at all, but somehow I don’t sleep well anymore and experience more pain then normal.

When we think about changes in mental health, sometimes we think about the more obvious, like worrying more often or feeling down, or a depression.  But challenges can also show up in different ways:

  • Sleeping more or sleeping less, experiencing disturbances in our sleep;
  • Finding it difficult to concentrate on things;
  • Being more irritable but not really know why.
  • Feeling something in the stomach, with stomach pains or cramping or trouble eating things that they wouldn’t normally have trouble.
  • Feeling pain more or more often

It is important to not only to realise any bodily changes, but also more subtle changes of our behaviours of in our mental health and take a step back on time to strengthen your mental balance. (9)

Can I still leave the house and catch some fresh air?

This depends on the rules in your country. Some countries have strict rules with regard to leaving your house in order to prevent Corona COVID-19 from spreading. Generally, it is good and healthy to go outside and to breathe the fresh air! So if your country rules allow it, go for it! Just make sure you keep a distance of 1,5 meters / 4-6 feet to other people. (6)

Physical exercises in Corona times (1) Can you continue to do your swimming exercises if you keep the recommended social distance?

In the seawater or lakes: the answer is yes. In swimming pools who are treated the with chlorine: we do not have scientific evidence for this yet and don’t know for sure. What we do know is that Chlorine seems to work well against the Corona Virus and therefore the risk is likely low or none (6)

Physical exercises in Corona times (2). How do I keep physically fit?

It important to keep moving. Especially if other routines involving movement in your life have stopped for some reason. Consider some of the exercises on this website: http://www.care4brittlebones.org/en/information-platform/rehabilitation-fitness-and-daily-living/

Symptoms

I am concerned because as my throat is aching and maybe I have a dripping nose. Is there anything I can do to find out, if I need to be concerned?

An easy way to check on your health status is to take your own temperature every morning. It should be below 37,5 degrees / 99.5 Fahrenheit every day (6). If it is, you don’t need to be concerned.

What is the impact of the new Corona virus on people with OI?

There is currently no knowledge specifically about the impact of Corona virus for people with OI (1).  Generally, an infection can have very different severities, ranging from “symptom free” to “severe / fatal”.

How do I recognize COVID-19? What are the symptoms?

The most common symptoms of COVID-19 are fever, tiredness, and dry cough. Some patients may have aches and pains, nasal congestion, runny nose, sore throat or diarrhea. These symptoms are usually mild and begin gradually. Some people become infected but don’t develop any symptoms and don’t feel unwell. Most people recover from the disease without needing special treatment. Some people who gets COVID-19 become seriously ill and develop difficulty breathing. Older people, and those with underlying medical problems like high blood pressure, heart problems or diabetes, are more likely to develop serious illness. People with fever, cough and difficulty breathing should seek medical attention. (5)

What do I do if I suspect an infection of someone with OI?

Contact your family doctor by phone. These doctors have to be up to date about the best action where you live. This may involve a check is the infection is caused by Corona or not. The guidelines per country vary. (1)

Contamination & protection

**NEW** How do I know that someone has fully recovered and is not contagious anymore?

You do stop shedding the virus when your symptoms go away after you’ve had a COVID-19 infection. The recommendations may vary by country. In some healthcare institutions, you are allowed to go back to work after a COVID-19 infection, if you are symptom free for a week and you have had two negative COVID-19 tests that are at least 24 hours apart. The test is done by taking mucus from the back of the throat or the back of the nose. (6)

What is the distance that a Corona Virus can “travel” by air?

The Corona Virus is not airborne, it is dropletborne. As far as we know today, it will only be transmitted 1,5 meters or 4-6 feet from the source. This is why going outside is still a good idea. Just keep that distance towards other people aat all times (6)

Should I wear a mask to protect myself against the virus?

This is one of the most debated topics and there is no scientific knowledge what is “right” or “better. You need to make your own judgement.

– In some countries the recommendation is not to wear masks as it does not completely shut out the air and gives some kind of “fake protection”. Also there is often a shortage of masks for healthcare providers for whom this mask is usually recommended.

– In other countries they do advise masks, not only to keep the droplets out as much as possible, but also to keep yourself from touching your nose, mouth or ears with your hands, which may carry the virus.

If you want to make a mask yourself, here is a tip from Dr. Michael To, who is one of the key professionals treating OI in HongKong / China. It is based on kitchen paper, material etc that most people have at home. They are tested >90% similar to surgical masks.  https://www.facebook.com/watch/?v=229384851412190 (7)

Is there a higher risk for people with OI in relation to the new Corona virus?

We don’t know that yet. Some individual people with OI may not face a higher risk. However, collectively people with OI are considered as people “at risk” (1). This is why:

  • the risk of infection per se does not appear to be increased for people with osteogenesis imperfecta compared to the normal population. OI does generally not affect the immune system as such (1).
  • The severity of symptoms and the risk for pulmonary problems however is increased in people with short stature, abnormal chest shape, kyphoscoliosis, and vertebral or rib fractures (2). In particular, the involvement of the lower airways (the lungs) and not just the upper airways (nasopharynx, trachea) seems to have an important influence on the severity of the course of the disease. It can be assumed that a coronavirus infection is on average more severe due to the risk factors that are frequently present in the context of OI. According to the current status, these risk factors include the following symptoms:
    • Lung diseases of any kind
    • Reduced lung volume with a smaller upper body (e.g. due to a pronounced deformation of the spine)
    • Inadequate ventilation of individual lung sections due to deformation of the upper body
    • Insufficient ventilation of individual sections of the lung due to weakness in the respiratory muscles other chronic diseases such as high blood pressure (1)

For these reasons, people with an osteogenesis imperfecta should particularly try to avoid infection and strictly adhere to the recommendations provided by their national authorities and the World Health Organisation.

What can I do as a precaution?

  1. a) Pay attention to good personal hygiene: Please follow the guidance that national authorities provide. In addition, we recommended hygiene measure issued by the WHO (5):
  • Regularly and thoroughly clean your hands with an alcohol-based hand rub or wash them with soap and water.
    Why? Washing your hands with soap and water or using alcohol-based hand rub kills viruses that may be on your hands.
  • Maintain at least 1 meter (3 feet) distance between yourself and anyone who is coughing or sneezing.
    Why? When someone coughs or sneezes they spray small liquid droplets from their nose or mouth which may contain virus. If you are too close, you can breathe in the droplets, including the COVID-19 virus if the person coughing has the disease.
  • Avoid touching eyes, nose and mouth.
    Why? Hands touch many surfaces and can pick up viruses. Once contaminated, hands can transfer the virus to your eyes, nose or mouth. From there, the virus can enter your body and can make you sick.
  • Make sure you, and the people around you, follow good respiratory hygiene. This means covering your mouth and nose with your bent elbow or tissue when you cough or sneeze. Then dispose of the used tissue immediately.
    Why? Droplets spread virus. By following good respiratory hygiene you protect the people around you from viruses such as cold, flu and COVID-19.
  • Stay home if you feel unwell. If you have a fever, cough and difficulty breathing, seek medical attention and call in advance. Follow the directions of your local health authority.
    Why? National and local authorities will have the most up to date information on the situation in your area. Calling in advance will allow your health care provider to quickly direct you to the right health facility. This will also protect you and help prevent spread of viruses and other infections.
  1. b) Do breathing exercises: Everyone affected by OI can try to improve their lung function themselves and regularly practice breathing exercises (1). More information about this can also be found on the OIF-website: https://oif.org/wp-content/uploads/2019/08/Take_Charge_of_your_Breathing.pdf (3)
  2. c) Keep social distance or choose for (partial) isolation, if needed: The recommendations very much depend on your local circumstances and the risks involved for the individual person with OI. It usually is wise to avoid meetings with many people. (5)
  3. d) Strengthen the immune system: Keep your general health up by eating healthy food, ensure you are moving enough even if you are staying at home, ensure your house is well ventilated and last but not least: stay positive and try not to worry too much. If this is difficult, share your worries with other people so we can help each other. Look actively for distraction and fun or positive things to do to pass your time and keep your mental energy up. This will also support your immune system! (1)
  4. e) Other practical tips have been issued by the OIF, see https://oif.org/coronavirus2019/?fbclid=IwAR0CG6W0bPHuP6Kl4FCFFGT4-hHmDctBDF6-BAdx5z7Kr1Mgb4Pw6wYL8Co (5):

Treatment & vaccine

If someone with OI has been infected with the Corona virus and requires help with breathing, is anything special needed?

This depends on the individual patient. If a ventilator is being used, it is recommended to advise the doctor of OI to ensure the ventilation is done in a safe way. Contact your OI network for help if needed (for example OIFE, OIF or Care4BrittleBones). (6)

Can Ibuprofen or other non-steroidal-anti-inflammatory drugs worsen Corona?

This information is currently spread through the internet. There is no scientific evidence for that at this point in time. You need to make your own judgement together with your local doctor. Alternative prescription-free medication for treating fever and pain are available if you want to avoid using Ibuprofen. Keep in mind that using this medication makes it difficult to know, if you have fever or an inflammation, which are important diagnostic indicators for Corona/Covit-19. More information on this: https://www.fda.gov/drugs/drug-safety-and-availability/fda-advises-patients-use-non-steroidal-anti-inflammatory-drugs-nsaids-covid-19 (6)

Is there a vaccine for people with OI that may help in some way?

Some people have read information about a vaccine in relation to pneumonia and OI (see here). The link refers to pneumococcal infection, which is a bacterial infection. The vaccine does not provide any protection against the virus corona. There is no vaccination against the coronavirus that has been tested on humans today.  (4) Generally, it is important to have all recommended vaccinations in place at all times. The views of medical professionals vary, if it is sensible for a person with OI to get a flu shot and a vaccine against pneumococcal infection at this point in time. Some think this is still a good idea, if you can receive the shot in circumstances where the infection risk is low (6). Other sources advise that now is not the right time to get a vaccination as it temporarily diminishes the immune response of the body (4).

Recovery

**NEW** If we get infected with COVID-19 and fully recover, is our lung function forever diminished?

Normally, the infection itself will not affect your lung function, once you’ve recovered. If you simply have an infection and get a flu-like illness, a cough, some increased shortness of breath, it will eventually go away. It is not likely that it will affect your lung function at all once you’ve recovered.

In some cases a complication may occur in relation to patients in the ICU on ventilators, who developed ARDS (Acute Respiratory Distress Syndrome). (6)

**NEW** When someone has recovered from COVID-19, can this person get infected again or is the person immune?

The exact answer is still not known entirely, but it appears that if you’ve recovered from COVID-19 you cannot be re-infected by that version of the COVID-19 virus. On the other hand: the expectation is that the virus may mutate over the months ahead. So it is possible that people get re-infected if the virus mutates enough that the immunity you’ve built up is not effective. (6)

OI specific: fractures, OI treatment & other information

**NEW** What can I do if it is likely that I have Corona / COVID-19 and I don’t have any local help that knows how to deal with OI in relation to Corona?

For people in Europe who have OI or another rare bone disease a special 24-helpline has been opened by the ERN-BOND in collaboration with Federazione delle Associazioni di Persone con Malattie Rare d’Italia (UNIAMO FIRM) and with the Associazione Italiana Osteogenesi Imperfetta(ASITOI): +39-3311728796

You can approach them by calling or sending a whatsapp message with your question.

**NEW** If we were to fracture now, while at risk for COVID-19, how do we best handle going to emergency services?

The answer varies per country, city and hospital. Check out with a phone call what the best approach is BEFORE you do into hospital. In some cases hospitals are preventing patients from what they call elective surgery (meaning: surgery that is not urgently required). For the vast majority that does not include broken bones. Many medical centers have dedicated areas for patients without COVID-19 symptoms who need treatment for other emergencies. It is possible that the hospital indicates that you need to go to another hospital than you are used to. (6)

I have a mild form of OI and have no special problems with my lungs. Can you confirm that I am not part of the group at risk?

We can not confirm that as we do not know the answer at this stage. Fact is that lung tissue of every person has collagen in it, Since the collagen in people with OI is different, the lung tissue of people with a mild form of OI is also different from other people. To be on the safe side, we consider everyone with OI collectively as “at risk”. (6)

I would normally have my regular Bisphosphonate treatment at the hospital now. Does this still go ahead or should it be postponed?

It is good to discuss this with your treating doctor as the circumstances vary locally. They may advise that that your Bisphosphonates can be administered a bit later or in a separate part of the hospital to ensure there is no contact with people who may have Corona (6).

Published recommendations of the Chinese Health Authorities to other countries:

We regularly receive updated directly from our network partners in China about the new Corona virus. If you would like to receive them, please request it by sending an e-mail to info@care4brittlebones.org

For other topics the information on COVIT-19 is the same for people with OI as for every citizen in your country. This includes the impact of COVIT-19 on:

  • children
  • living in the same household with someone infected by COVIT-19
  • pregnancy
  • giving blood
  • ability to physically convene in groups
  • ability to visit family members including those in hospitals or other care institutions

Do you have an urgent question that has not been answered above, let us know. We will try to answer the most important questions through our medical network and publish the answers here.

Any questions? Get in touch!

If you have any questions regarding Coronavirus related to OI, please get in touch with us. We will forward your questions to our network of health specialists.

Source indication
(1) website DOIG  http://oi-gesellschaft.de/category/aktuelles/
(2) website OIFE  https://oife.org/2020/03/11/corona-info-for-people-with-oi/
(3) website OIF https://oif.org/coronavirus2019/?fbclid=IwAR0CG6W0bPHuP6Kl4FCFFGT4-hHmDctBDF6-BAdx5z7Kr1Mgb4Pw6wYL8Co
(4) response Pulmonologist VUMC, Amsterdam  (NL)
(5) WHO https://www.who.int/emergencies/diseases/novel-coronavirus-2019
(6) OIF webinar with Dr. S. Sandhaus and Dr. F. Glorieux, 19 March, see here: https://youtu.be/QQmjtcaTO_Y
(7) Dr. Michael To, HongKong/China.
(8) Foundation Care4BrittleBones
(9) OIF webinar with Dr Kara Ayers and Dr. Michelle Fynan 26 March