Writing a book – a dream for many people. For Karina Sturm, it was a chance to accept her diagnosis – Ehlers-Danlos syndrome. By giving advice, she wants to enable other people to do what she has already managed to do herself: to become an active part of their own disease management and to live a self-determined life. Who helped her to achieve this and how she rolls otherwise, she tells us on REHACARE.com.
Name: Karina Sturm Age: 36 City: Neumarkt in Oberpfalz, Germany Occupation: Freelance Journalist Impairment: I live with several chronic illnesses and an invisible disability. The central underlying disease is Ehlers-Danlos syndrome (EDS), which has led to several other conditions. Among them, for example, mast cell activation syndrome, dysautonomia, small fiber neuropathy, craniocervical instability, compression syndromes, and many more.
Karina Sturm: Good days in life with a disease like Ehlers-Danlos syndrome are days when my pain is so well controlled that I can participate in life without the pain keeping me from various activities. On a – I always rather call them – better day I manage all the to-do's on my list without being completely exhausted afterwards or even having to experience the negative consequences of the effort the next day. On a better day, I get up in the morning relatively refreshed, get out of bed before 10 a.m., and can accomplish several tasks throughout the day; I can eat without feeling sick or having a reaction to the food; I can walk, bend over, and do household chores without being flat for a week afterwards. On a good day, I might be able to meet friends, write an article, and do all the things that make my life a happy life.
Which auxiliary means or daily living aids are indispensable for you?
Karina Sturm: Assistive devices are one of the main pillars in life with EDS, along with physiotherapy, pain management and lifestyle adaptations. There are, for example, bandages and orthoses for the unstable joints, mobility aids such as rollators, walking sticks, wheelchairs and crutches as support in everyday life, and then of course the aids that are not even officially considered aids, such as the purchase of new mattresses, special pillows, or even such things as a vacuum cleaner robot, which for me, for example, is one of the best ten purchases for my chronic illnesses, because it saves me a lot of pain.
The best aid of my life so far is a recumbent bike. Due to my illnesses/disabilities, I have been unable to participate in sports activities for a very long time. Likewise, I have always been a very competitive person, meaning that before I became ill, I had constantly competed in volleyball or otherwise with other people. I have never lost this love of sports, even though I tolerate very little activity now. I have not been on a bicycle for 12 years. My back pain, spinal instabilities, and balance problems have meant that I can barely sit on a regular bike for ten minutes. A fall would have fatal consequences. Because I walk practically everywhere, but my walking radius is limited, for many years I could only walk around my apartment. Since a few months I have a recumbent trike and suddenly my range of motion has increased tenfold. In addition, the bike allows me to strengthen my muscles while reducing pain due to the comfortable position. I can hardly put into words how it feels to ride down a long, sloping hill and feel the wind in my face while exploring new places on my own and without help. A whole new life.
What would you like to see from society and your fellow people in dealing with people with disabilities?
Karina Sturm: There are many things that need to change for people with chronic illnesses and invisible disabilities. But one of my biggest wishes as a chronically ill woman living with an invisible disability is that the people around us – especially the medical professionals – come to understand that many chronic diseases/disabilities cannot be seen. But that does not mean that they are not there or that those affected "imagine" their illness. In that context, at the same time, I would still like to see more talk about medical gaslighting and gender bias in medical circles, because I think it's all related:
Prejudices against young women who don't look sick often lead to medical gaslighting as a consequence. And only if we as affected people talk openly about it and the doctors listen to us, it can be ensured in the long run that especially women with invisible diseases/disabilities are not constantly misdiagnosed and treated. Incorrect treatment leads to physical and psychological damage that sometimes cannot be reversed and that accompanies us throughout our lives. None of this should be necessary...
Which assistive device would urgently need to be invented and/or improved?
Karina Sturm: Hm, I don't even know if I would say that new aids would have to be invented for me – and I can only speak for myself, because every person with EDS has very different needs. Actually, there are super many great potential everyday helpers. What I think is the bigger problem is that a lot of what is an assistive device for me is not considered an assistive device in our current healthcare system, making them prohibitively expensive. The quality of life of someone with EDS depends a lot on how much money they can invest in medical equipment that is not covered by insurance. And that's unfair. Participation in life should not depend on earnings/financial resources – especially since most chronically ill people are not necessarily rolling in money either. Let's take my recumbent bike as an example again. That has not been a cash benefit. Such bikes quickly run into four to five figures. Most people with disabilities can never afford that, or only after many years of saving by doing without other essential things in order to set priorities. Really everything in our lives is about prioritizing because we can never buy all the things we would actually need for the disease and we can never do all the things we would like to do. So I saved up for this bike forever and then ultimately even got it covered by the insurance. By the way, this was the first time that I received any major service, which is not part of the standard catalog, from the insurance company. I am incredibly happy about this, but at the same time I know that this is a great privilege which is certainly not granted to every person with a disability.
Due to her own invisible disability and the experiences she has had with it, Karina Sturm wishes that topics such as "medical gaslighting" and "gender bias" would be addressed more often in public.
What has been your biggest challenge so far that you have mastered – and what has helped you?
Karina Sturm: My biggest challenge was to get to a point where I accept that I will never be healthy again, but can still live a happy life with my limitations. In that context, finding something that fulfills me and gives me purpose was of particular importance to me. I became acutely ill in 2010. From one second to the next my life was over and everything I had always defined myself by – job, career, sports, money etc. – was suddenly gone. Many years of self-doubt and grief followed. So about six years after the acute onset of the disease – about two years after I was even diagnosed with Ehlers-Danlos Syndrome – I was finally at the point where I had my symptoms somewhat under control, had digested the anger over the many misdiagnoses I received, and had found a new passion that made me feel for the first time since the onset of the disease that I had so much to give and contribute not in spite of my disease but because of it.
If nothing was impossible: Who would you like to meet one day and why?
Karina Sturm: Oh, there are so many. On disability, I would love to chat with Judy Heumann, one of the best known disability rights activists on earth. I'd probably start by telling her how badass everything she's done so far in the U.S. and around the world has been, and then I'd ask what tips she has for activists to successfully achieve their goals.
If we're talking about major figures in general – and if they may be living or deceased – I'd love to have coffee with Nelson Mandela, Malala Yousafzai and Mahatma Gandhi. Why? Because the life stories and the work of these three people are so impressive and inspiring. I would probably ask: How do you manage to do something like that?
If we just talk about famous people, I wouldn't mind having a drink with actor Shemar Moore, Dwayne Johnson or Jason Momoa or with actress Jennifer Lawrence and Christina Applegate. The reason: Come on, who wouldn't want to have a drink with The Rock, "Hollywood's nicest guy"?
What I wanted to say ...
Karina Sturm: At this point I would like to refer to my new book, which I have been working on for many years: Since November, the first guidebook on the subject of Ehlers-Danlos Syndromes has been on the market. Under the German title "Ratgeber Ehlers-Danlos-Syndrome; Komplexe Bindegewebserkrankungen einfach erklärt" it was published by the renowned Springer Nature Verlag.
In order to provide readers not only with basic scientific and medical knowledge from an expert's point of view, but also with practical tips from a patient's perspective, I brought on board two experts on Ehlers-Danlos syndromes, Dr. Andrea Maier and Dr. Helena Jung.
On about 200 pages, we guide affected persons, relatives, as well as medical personnel through all steps: from the diagnosis to the management of EDS. We also highlight comorbidities and their treatment options and provide helpful advice on socio-legal issues. In addition to the text and 30 illustrations, readers can also find extensive information in the 18 video interviews with national and international experts.
I hope that with this work we will empower people to become an active part of their disease management and that they will be able to live as self-determined a life as possible with EDS. At the same time, I would like to provide all medical professionals with a quick and concise overview of EDS and thus improve communication between patients and their caregivers and shorten the time to correct diagnosis and adequate therapy.
The book is available everywhere. More information about the book can also be found on my website.