EDITORIALS

It’s a small world…

Fear is the path to the dark side, they said in Star Wars. Because fear can be used as a political tool to convince people to do their social distancing. But fear can also be destructive and cause anxiety. Especially for people who are part of the risk group of Covid-19. How tired we are of hearing that the virus is “only” dangerous for the elderly and sick! The artist Chiara Bersani from Italy wrote a blog about what kind of feelings these statements create. Check it out!

Unfortunately for people with rare diseases like OI, these are discussions we will have to endure the coming weeks and months. Because when are restrictions too dramatic? And what are the costs? Nobody knows. We are all moving in new and unknown landscapes, trying to adapt.

OIFE’s Virus Workout every Sunday on Zoom

As the leader of an international organization it was both fascinating and scary to watch the situation develop so differently from country to country. What seemed unthinkable in one country (but not the other) was business as usual five days later. Dramatic changes from day to day. Hour to hour.  “It’s the end of the world as we know it.” said R.E.M. How will the world will look like after this? We just know it will be different…

But there are also indirect positive consequences of the virus. The international OI-community has come together to help each other with advice, information and support. The OI Foundation (OIF) did a Q&A session with dr. Sandhaus and dr. Glorieux. And thanks to Zoom they were able to gather more than 250 participants from all parts of the world. Every Sunday evening, OIFE have invited people to “Virus Workout” on Zoom. Keeping active and doing some cardio is still important even if it has to happen in our own homes. But it’s so much more fun to be active together! And laugh and joke a little as well, which is good for the mental health. Care4BrittleBones have invited people to virtual concerts, which has also contributed to keeping up the spirits.

OIF have also hosted a webinar about OI & mental health. One of the speakers were Kara Ayers – who is the coordinator of the network of people working with psychosocial health and OI. Some of you might have received an email about an “Expertise Finder Survey for psychosocial aspects of OI”. It is issued by Care4BB and their goal is to improve quality of life of people with OI by learning about good practices, finding relevant research and identifying experienced professionals and patient experts interested in psychosocial issues & OI.

In fact, psychosocial issues is the main focus of this magazine, because the topic has been slightly ignored before. Maybe because people with OI have good coping skills? No matter how resilient we are, we all need some support from time to time. Especially in turbulent times like this, with a worldwide pandemic scaring even the toughest of us. My personal advice is to reduce the time spent on news and social media and use your time on something positive like volunteer work, hobbies, OIFE virus workout or virtual happy hour with friends or family.

If there is one thing that people with OI are good at – it’s entertaining ourselves. Many of us have lots of practice from long hospital stays and time at home because of fractures. So we can do this! And with the help of Zoom & Skype – we can even do it together! Because it’s a small world we are living in. For better and for worse. Stay safe everyone!

Kind greetings
Ingunn – OIFE president

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MEDICAL

COVID-19 – info for people with OI

The OIFE will update this page with links to resources about COVID-19 and osteogenesis imperfecta. We have created a shortlink to this page to make it easier to remember. If you type in the following in your browser, you will be redirected to this page oife.org/covid19

Are people with OI in the risk group? 

We have received some questions if people with OI are in the risk group regarding the Corona virus (COVID-19). OI does not affect the immune system as such! However lung connective tissue is altered in all types of OI. The severity of symptoms and the risk for pulmonary problems is increased in people with short stature, abnormal chest shape, kyphoscoliosis, and vertebral or rib fractures.

In some countries they have specifically put osteogenesis imperfecta on the official list of “at-risk patients”. See the “Clinical guide for the management of rheumatology patients during the coronavirus pandemic” as an example from the UK.

See also “A message from the OI Foundation about Coronavirus”.

Resources on pulmonary issues & OI 

Fact sheets from the OI Foundation about:
– Respiratory issues: https://bit.ly/2ItnPx
– Adults with OI & breathing issues: https://bit.ly/2TLc1eB
– Pneumonia vaccine for people with OI (new update from April 2020): https://bit.ly/3aBJmzm

General emergency information for people with OI 

Official sources of information about COVID-19

With the fast-evolving situation surrounding COVID-19 in Europe and across the world, members of the rare disease community may be concerned about their health. Please find below links to official information sources that are updated regularly. We also advise that you refer to information published by your own national health authorities/ ministries.

ERN-BOND COVID-19 Helpline 

ERN BOND – European Reference Network on Rare Bone Diseases has created a 24-hour Help Line for COVID-19. The purpose behind it is to give advice in cases where a person with a rare bone disease (incl. OI) has contracted COVID-19 or there is a strong suspicion that they have it.

The Help Line was created in agreement with the rare disease umbrella in Italy Federazione delle Associazioni di Persone con Malattie Rare d’Italia (UNIAMO FIRM) and with the Asitoi – Associazione Italiana Osteogenesi Imperfetta Onlus.

You can contact the Help Line by calling or sending a whatsapp message to the number: (+39) 331 1728796

For now, the network is primarily for Italy (the country in which the emergency is most acute), but ERN BOND is encouraging similar helplines in other countries.

Webinars on COVID-19 & OI on YouTube

There has been several webinars on COVID-19 & OI in the past weeks and months. We bring you the links to the English language

If you are in doubt with what you should do in the current situation – please contact the health care providers in your country!

 

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