ADVOCACY

SURVEY ON COVID-19 & RARE DISEASES

Are you affected by a rare disease or a caring for someone affected by a rare disease? Then we strongly encourage you to share your experience on how the #COVID19 pandemic is having an impact on your life by completing this survey.

The survey is developed by the rare disease umbrella EURORDIS – European Rare Diseases Organisation and is available in 23 languages and open to rare disease patients, family members and carers around the world.

The main objectives of the survey are:
– Evaluate the impact of COVID-19 on rare disease patients’ medical care, social care and well-being.
– Identify measures and facilities that are helping rare disease patients to cope with the pandemic
– Identify aspects that may have a negative impact on rare disease patients care and well-being
– Identify potential long-term consequences of the pandemic

If enough people with OI answers worldwide – the OIFE can get useful data on consequences for people with OI specifically, which we can use in our policy work.

 

 

 

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STORIES

Coronavirus & the toxic narrative of disability

Every catastrophic film, every war novel, every graphic novel about dystopian futures is for me an opportunity for an imaginative exercise on my death. If you have been a kid with a disability and then a girl with a disability, to finally become a woman with a disability, then you have grown up with the request to remain rational.

During evacuation drills they teach you to stay in your place, not to hinder the escape of others and to wait for rescuers to come to save you. On the plane you will always be on the side of the window so that the people next to you can escape without having to step over you.

And no, you can’t get angry. You can’t even get too sad.

Emergency management is a science and you, aware of your physical condition, must understand that society is something complex and in every emergency the goal is to save the largest number of people who can then survive.

Embracing your limits is your duty, rejoicing in what you have, for the time you have it, is good practice.

Aiming for survival during a zombie epidemic would therefore be a foolish waste of time, better cultivating fantasies of heroic deaths in which your legacy will be the survival of your loved one rather than an entire community or group of children …

Coronavirus: How to reinforce a toxic narrative?


Then comes the coronavirus and you live a few km away from that town that everyone talks about because it is the epicentre of the Italian version of the contamination. And find out that no, now that we are at that point all that exercise done in your first 35 years of life is not going well for you.

Dearest world, dear television, dear journalist, dear expert in the most disparate scientific subjects, however praiseworthy your attempt to say that the coronavirus Covid-19 is a disease that is only lethal only for a low percentage of the population, you every time conclude, by saying that I will die.

«Coronavirus is dangerous for weak people … elderly people … people with previous respiratory diseases … cancer patients»

I didn’t understand it right away. At the first interviews it seemed to me that their words calmed me too. Or maybe I just wanted to be comforted. Also be considered a subject to comfort.

But we are not. I am not, nor are the older people, nor the cancer ones. We, all of us, are the examples that comforts others. We are so when we are called to be examples of life, endurance and wisdom (read under ableism).

We are such when we are asked to accept the fatal percentage of an illness in our ranks.

After all, we live so far from the idea of immortality and so in confidence with that of death, that it will certainly not be a great effort to accept the role of borderline cases in a collective narrative aimed at not questioning the power of the healthy.

A wasted opportunity

This moment could be used in many ways. This virus, its easy movement in the world, could become an occasion to remind us that we are human and as such we are fragile. We could have accepted all together that we are not immortal, not only we weak subjects but also that 40-year-old who feels the eternal power flowing in his bones.

It would have been nice for once to seek a more noble sense in a truly special moment. Perhaps an enlightened precedent would have been created, perhaps caring for oneself and others would have truly occupied the center of the world for some time. And since I’m playing a fantasy game, I like to go further and think that perhaps capitalism would have trembled, seeing its fake immortal and performing bodies waver.

We would all have been fragile. And we, who have always known fragility, swear that we would take care of you. But none of this happened…

We could have sailed together. Instead each one remained anchored to its reef and collective reflection preferred the more immediate consolation.

Maybe I will get sick and if the TV happens, he told me that I will most likely occupy that small percentage of hopeless. So since I have been organizing death since I was a child, I decided to write this article. I won’t be able to save anyone with my passing. And if it happens as they say, it will be lonely and far from heroic. But I want to tell you that while the virus sneaks around a few kilometers away from me, I read Laura Pugno who in her “In the wild” says:

“The savage is decided by us, it does not exist in nature, it is created when we close the front door, we define an inside and an outside (…) It comes by itself, from the wild, that it is dangerous”.

Written by Chiara Bersani, Italy (translation Anna Rossi)

 

 

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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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ADVOCACY

Discrimination in Critical Care Guidelines

The rare disease community raises alert over discrimination in #CriticalCare guidelines during COVID-19 pandemic. Read the statement from EURORDIS to see proposals for healthcare practitioners on how to avoid discrimination against people living with a rare disease and provide optimal care during #COVID19

OIFE supports EURORDIS in their view that critical care guidelines must be non-discriminatory and should be respectful of fundamental ethical principles and based on “clinical appropriateness and proportionality of the treatments”1 . They should be aligned with international law, notably the UN Convention on the Rights of Persons with Disabilities (article 11 & 25) and the UNESCO Universal Declaration on Bioethics and Human Rights, as well as disaster medicine ethical guidelines.

 

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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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OIFE

Virus Workout every Sunday

Are you stuck in your home because of COVID-19? Are you bored? Can’t go to the gym or swimming pool?
Don’t worry, OIFE is inviting you to a virtual wheelchair aerobic session every Sunday!

On March 29th we will try a moderate intensity workout. On April 5th we will repeat the high intensity workout.

Time: Every Sunday
– 18.00 Central European Time (CET)
– 12.00 Eastern Time (EST)

Place: ZOOM – https://zoom.us/j/944443892

The exercise lasts approximately 30-45 minutes. Make sure you have light weights/manuals available. If you don’t have weights you can use 2 small water bottles (ca 0,5l). If you don’t have a wheelchair – you can use a normal chair instead.

Join our Facebook-event and invite your friends as well: https://www.facebook.com/events/649959332447113/

We have space for 100 people in our virtual gym – so first come first served!

On our first Virus Workout we had participants from 9 countries exercising together, incl. Natalie from Canada.
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