STORIES

Artists with OI: Ditte Johansen

Can you tell us a little about yourself?

My name is Ditte, and I’m a 25-year-old woman, that is born – and still living – in Denmark. I’m working as a writer, and besides my ordinary and boring adult life, I’m filling my days with lots and lots of hobbies; I’m an actor, an author and “a public person” in some ways when the opportunity presents itself. I love having a lot on my plate, so I’m always busy, busy, busy!

When did you decide to publish a poetry book?

Well, that simply wasn’t a decision I had to make. I’m born with a creative nature and an artist’s soul, so writing has always been an innate interest. And if you love books and is writing yourself, it is my conviction that you will cross the poetry genre minimum once in your life. 

How did you do the publishing?

Since I was 18 years old, I’ve tried to publish my stuff at all costs. But all the profiled publishing companies wouldn’t touch any of my scripts even from a distance. I knew what kind of authors they wanted, but that wasn’t me. And instead of changing my personal touch and risking to lose myself in the process, I simply gave up. My integrity has always been my first priority, so I just locked my scripts away in a drawer and forgot all about my dreams. Until the day, when my boss introduced me to one of her friends; a publisher who was only interested in poetry. So I took the chance, and he LOVED my script! And the rest is – well – history…

Why do you deal with psychosocial aspects and OI in your poems?

As I see it, OI and psychosocial aspects are just two sides of the same coin. If you – as a person with OI – are telling everyone that you can’t acquaint yourself with some kind of psychosocially related problem, you’re lying. Being different; being a minority will always create some frustrations associated with having OI, be in a lot of pain, etc. I wanted to tell an honest story from a disabled person’s perspective. There’s a huge lack of honesty associated with being disabled. The stories you’ll probably find nowadays will generally be these nauseating heart-warming stories, that aren’t even telling the (whole) truth. 

What projects are you currently working on?

As I said before, I love having a lot on my plate, so I’ve currently got three projects that I’m working on. I just signed a new contract with my publisher for my next poetry collection, which will be a follow-up to my first one. I’ve also finished the English translation of my first book – “Puppet Infirmary”. Both of them are getting (re)published by the end of the year. So all you English-reading people – there’s a lot in store for you! Meanwhile I’m working on a novel, but that project may not happen for a long time. But it will come sooner or later. I’m stubborn and hard-working.

What role does the artist have in society?

I don’t think that art should be art, just because it could be. Or that you should be an artist because you can. Art is like air – even though you’ll never see it, you can’t live without it. If society was a big vase, art would be the glue that’s sticking all the broken pieces together over and over again. If we eliminate all kinds of art – the society would corrode and crumble away. Being an artist is an important job – maybe one of the most important ones, because you’re the voice of other people. Whether you paint or write, you are channelling emotions through your book or painting, that they may not be able to express themselves. You’re telling their stories for them, so to speak. And that’s why artists are so important to society – because they’re expressing all your personal feelings, even when you can’t do it yourself.  

Is there anything you like to tell our readers?

Please be honest, with yourself and with others! The stories you tell, may be other people’s guidelines. And if what you say isn’t true, you’ll mislead them. If life is hard – tell them! If life is freaking awesome – tell them! We all have the responsibility to teach the next generations what life is about and how you live it. With or without OI – that doesn’t matter. No one is satisfied with a soothing lie. 

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STORIES

The art of being unhappy

Can we be unhappy or do we keep on with that unbreakable spirit which people with OI all seem to have? Why do we want to be so happy? Think about this with me for a while!

Imagine: you were a 2 year old toddler and your mother or father asks you to draw something simple like a tree on a piece of paper? Right, you grab a pencil and start to move the pencil over the paper making scratches while you look your mother or father into the eyes waiting for their affirmation… 

How did your mother or father react? Of course she or he put on the high pitched voice and produced some words like: “Wow, what a nice tree you just designed! That’s amazing!”. Nothing on the piece of paper has the shape of a tree… 

But that’s what happened right? 

We do this all the time towards toddlers because it makes them happy. And we as humans want to make others happy. Even if what they do is not good or correct. 

Happiness is imprinted from the moment we start to communicate with each other. Since we are born: Baby don’t cry, be happy!  We believe that when we feel happy, we feel better. These days, everybody has a pressure to be very happy. We are all on social media, seeing how everyone else is so happy. 

But to be honest, if I look around me, I see a lot of the opposite. Especially in the age group between 15 and 35. The ones who have spent their youth on social media. A lot of friends my age and even a lot younger are suffering from alcohol and drug addictions, depressions and burn-out. And it starts a lot earlier than it used to. 

We all want so much. We want good grades in school, and good scores on the sports team, and the boy- or girlfriend who is the most popular and perfect parties!  

When we graduate and look for a job, we want the best job we can get. With all the extra bonuses we can get, like a car, a phone and a laptop. We want flexible hours, so we can arrive and leave work when we can. And it goes on. To get that job, we need to search for a long time, and I see that young people just stay home waiting for that job to come along. Instead of doing something else which is not that perfect, we can’t handle the fact that we would be a little unhappy with that temporary job. 

Maybe, for young people with OI it’s different? Because we have our relatively severe disability, we can’t expect things to go so smoothly. Like finding the best girl- or boyfriend, or the best job we can get? We are resilient enough to fight against things that doesn’t go so well in our lives. 

Are we…? 

In 2016 I was in Orlando, Florida attending the national American OI-conference. I was there with around 350 others with OI. I’ll never forget the first evening when we did a “walk” in the hotel complex we stayed in. For me it was very weird to go out and shout about how great it was to have OI. I was a little bit shocked because of the enormous amount of other people with OI and the extreme positive approach towards OI.

But to be honest. After 3 days being there, hearing all those positive ideas about having OI, I started to believe it a bit. And I understood that it is a lot easier to cope if you can regard OI as a kind of a blessing. However weird that might sound… 

So yes, it is possible that we can “get up again” more easily after a negative life experience than people without OI. Because we have learnt how to do it since an early age. 

But when you have to do this many times during your lifetime, sometimes it all becomes too much. And then we have to be aware and allow ourselves and others to feel unhappy. It is not a blessing to have OI after fracture number 142 or so. OI can really be a pain in the ass, or let’s say in the bone… 

Maybe we need to learn the art of being unhappy in order to better understand our own feelings…?  

Written by Stephanie Claeys, OIFE Youth Coordinator

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STORIES

How Apple Watch helps me stay healthy

“Jacob Wittorff has called the alarm center after Apple Watch detected a bad fall.”

That message lands late at night on May day 2019 on my parents ‘and brothers’ phones. Shortly before, I was pushed home in my wheelchair from the football cup final at the stadium. However, the evening comes to an abrupt end. I was slightly drunk, on my way through the rainy streets and I didn’t notice the curb; suddenly my wheelchair is upside down. At the crash, I break one of the tibias and hit my head, but my Apple Watch instantly detects the fall, automatically dials the alarm center and sends the text message to relatives whom I have specified as contacts in advance.

Apple calls this fall detection feature, and it’s available on the two latest Apple Watch models (Apple Watch Series 4 and Apple Watch Series 5). Fall registration is one of the reasons why I, as a wheelchair user, do not want to manage without my Apple Watch. I live alone in my apartment on Nørrebro, Copenhagen, and one of the things I fear most is that one day I fall and am unable to even get up or call for help. But I don’t have that fear when I have my Apple Watch on my arm.

Special features for people in wheelchairs
Fall registration, however, is far from the only feature of the watch that can benefit wheelchair users. Since launching the first edition of Apple Watch in April 2015, Apple has equipped the watch with ever-increasing features that appeal to people trying to live an active life in a wheelchair.

For example, the clock will notify you if you have been passive for too long in the last hour. In the first edition of Apple Watch, the message read: ‘It’s time to get up and walk.’ But as I said with a laugh to a friend when I got my first Apple Watch in 2015: “I feel a little like my watch is trolling me when I get that message”.

By 2016, Apple launched a new approach specifically for people in wheelchairs. Now, in the Apple Watch app, you can indicate that you are a wheelchair user, and instead you will receive a message that reads, “It’s time to wheel around.” The message is a call to make you move and get your blood flow going. I use it myself as an opportunity to roll out and grab a glass of water or a cup of coffee as I sit in front of the computer at my work. If you use an electric wheelchair, you will hardly benefit from rolling a small ride, but you may instead see it as a call to do a few quick stretching exercises.

Special exercise programs
Apple has also designed a number of exercise programs specifically for wheelchair users, which I use myself when going around Copenhagen. The exercise programs for wheelchair users do not count steps but pushes you make with your arms. In this connection, the calculation for burning calories has also been adjusted so that it is now adapted for wheelchair use instead of walking, running or cycling.

A piece of advanced electronics
Apple Watch also contains some technology that you won’t find in your phone. This applies, among other things, to the watch’s heart rate monitor, which continuously measures your heart rate. It doesn’t just happen when you exercise. It also measures your heart rate during the day. Therefore, in the Apple Health app, you can also constantly find your ongoing heart rate measurements, as well as your resting heart rate and your heart rate variance.

The clock also gives you alerts if your heart rate becomes very high without being physically active at the same time, and it also warns you if your heart rate becomes very low. At the same time, the two latest editions of Apple Watch also have a built-in ECG that enables the watch to take a cardiogram and thus identify irregular heartbeats. However, it is worth noting here that the ECG built into the Apple Watch has only a single built-in electrode, while the cardiograms made in the hospital use 12 whole electrodes located at different locations on the body. Therefore, Apple also emphasizes that the ECG meter in an Apple Watch cannot be used as a replacement for a professional ECG.

For me, over the past many years, Apple Watch has helped me take better care of my health. But if you are tempted to buy an Apple Watch, there are a number of things to keep in mind. First, the watch requires that you also have an iPhone. For example, if you have an Android phone, you will not be able to use the watch. In addition, you should also be aware that the fall detection feature only works if you have an Apple Watch Series 4 or the latest Series 5, and if you are under 65, you must also actively choose to turn it on in the provided app.

Written by Jacob O. Wittorff, OIFE-member Denmark (Translated by Coreen Kelday)

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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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RESEARCH

Rare Disease Research Challenge

The European Joint Programme on Rare Diseases (EJP RD) brings over 130 institutions (including all 24 ERNs) from 35 countries. On March 3rd Dace Liepina and Ingunn Westeheim was supposed to represent OIFE at a networking event in Paris related to the Rare Diseases Research (RDR) Challenges Call.

We were particularly interested in challenge nr. 3 “Characterize Rare Bone Disorders (RBD) Mobility Challenges in Real World Setting” sponsored by the company IPSEN. The aim of the challenge is to develop full-body automated mobility assessment tool(s) to assess real-life mobility challenges in people living with rare bone disorders, to be compared vs available disease specific patient- and Health Care Professionals (HCP)-reported mobility assessments. You can read more about the challenge here.

Because of concerns connected to COVID-19, Dace & Ingunn decided to cancel their trip, but we have followed up with meetings on Zoom and phone conferences with different stakeholders connected to the challenge.

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