Karina Sturm is my next guest for the Chronic Illness Support Guest Blog! You can find information Karina has provided about Ehlers-Danlos Syndrome (EDS) as well as some of her journey. We hope you find this information helpful in your journey with chronic illness.
Illness: Ehlers-Danlos Syndrome (EDS)
Tell us about yourself, what illness we are talking about today (definition, symptoms, etc.) and when you were diagnosed, how, what led to diagnosis, etc.
Hi, my name is Karina, and I am a freelance journalist from Germany who lived in San Francisco for six years. I also like to make films but wouldn’t call myself a filmmaker yet. My work’s main focus is on medicine, science, chronic illness and disability. It’s especially important to me to represent my community accurately, which isn’t always the case in media. Journalism isn’t the first degree I finished. In the past, I worked as a research associate in a biotech research lab. However, when I became severely ill in 2010, I had to quit my job, and that’s really where my chronic illness journey began.
So let’s give you a short summary of what happened to me over the last decade.
In 2010, I underwent a medical treatment for my neck pain and frequent headaches, and after that, nothing would ever be the same again. I got injections into the joints between my vertebrae; something went terribly wrong, and I almost died. Over the next months, I developed severe neurological symptoms; for example, I stopped breathing at night, couldn’t feel my legs or arms properly, the whole left side of my body went numb, and my motor skills were off. I thought I had a stroke or something similar, but I didn’t. Additionally, my neck started to crack with every movement, and I felt something shifting every time I would nod or turn around. I went to see doctors over doctors - none of which knew what was wrong with me. Like many other women, I was dismissed, belittled, and gaslighted. ‘It’s all in your head,’ they would say, or, ‘You are just depressed.’
I started to research myself and ordered my own tests. After six months, I finally got diagnosed with craniocervical instability, a condition that affects the area between your skull and the first two vertebrae of your cervical spine. The ligaments around my neck were too lax and unable to hold my bones in place. When those bones shift, they can put pressure on surrounding nerves, the spinal cord, and blood vessels, which is exactly what caused my neurological symptoms. Nobody knew why I had this at such a young age - I was only 24 years old.
I started physical therapy in the hopes of stabilizing my neck through my muscles. I tried all available techniques, from osteopathy to heavy weight lifting, but all that happened was that additionally to my neck, other joints started to become loose and unstable as well. This didn’t make any sense. So I started to look for answers and different therapies again. Four years after the onset of my acute symptoms, I sat on a plane to the US - my last hope to avoid surgery for my neck and to find out why my whole body seemed to be falling apart. I barely spoke English back then and hadn’t left Germany often overall. I was a young, very ill, terrified woman, but desperate enough to take this step. I needed answers.
In the US, I underwent a painful treatment with thousands of injections (prolotherapy) that didn’t have the effect me and my doctor wished for. However, he, unlike my German doctors before, didn’t give up on me. He was convinced there was an underlying cause for my multisystemic issues, and he sent me to a neurosurgeon in Maryland. I didn’t know this back then, but this surgeon was an expert for the condition I was living with my entire life and the cause for all my symptoms: Ehlers-Danlos syndrome (EDS). EDS is a hereditary connective tissue disorder that can lead to a myriad of comorbid conditions, one of which is craniocervical instability. After a few hours of examination, I was diagnosed with EDS and several comorbid conditions along with it in 2014.
How long did you suffer with symptoms before you were diagnosed?
I have been living with severe neurological symptoms for four years until I got my Ehlers-Danlos syndrome diagnosis. However, in retrospect, I had some minor issues since childhood. For instance, I always had intense nose bleeds as a kid that wouldn’t stop and needed emergency care; whenever I did any sports - I was a very active child and young adult as well - some body parts would hurt afterward, and I needed a lot of sleep to recover. I had gastrointestinal problems all my life and some other minor issues, nothing that really bothered me too much. I also thought it was normal to be in pain. Since none of my problems limited me in any way, I didn’t seek medical care for it, and the few times I did, doctors didn’t put the pieces together.
What treatments have you tried? Did they help? Did you have side effects? Etc.
Oh gosh, I tried all kinds of regular medicine, but also spent a lot of money on alternative treatment options - especially during the time where I did not have a diagnosis. The main problem with being chronically ill but not diagnosed is that all treatments you try can potentially harm you because it’s not a specific treatment for your condition. You are basically just experimenting in the hopes something will help. I had many harmful treatments before I knew I had Ehlers-Danlos syndrome, and so did most people in my community. After I finally received my EDS diagnosis, it got better since we could now tailor my therapies to my needs. What helped me the most was a combination of several approaches: medication for my chronic illnesses like mast cell activation and chronic pain, physical therapy to strengthen my muscles or physical activity in general (but very slow-paced), mental health support, assistive devices such as braces and mobility devices, and lifestyle adaption. With EDS, I don’t think there is a one-size-fits-all solution. It’s a lot of trial and error, and we all have such different symptoms. EDS can potentially affect any organ or any part of the body, so it always depends on the specific symptoms and comorbid conditions a person experiences.
What are five must haves that you can’t live without that help you cope with your chronic illness (Ex. book to read, coloring book, heating pad, bath, etc.)?
Do you have other illnesses? If so, would you like to mention them? What are they?
Ha, how much time do you have? Currently, I count 22 chronic conditions/symptom complexes. I never actually counted those and am a bit shocked now myself. The list is growing annually, though. Let’s see what we got.
My main diagnosis is Ehlers-Danlos syndrome, but then I also have an autoimmune condition (Hashimoto’s), mitral valve regurgitation, allergies, idiopathic lymphocytosis, mast cell activation syndrome, craniocervical instability & lower c-spine instabilities, chronic fatigue, temporomandibular dysfunction, vitamin deficiencies, lumbar spine prolapse, decreased platelet function, dysautonomia, small fiber neuropathy, sicca syndrome, scoliosis, thoracic outlet syndrome, factor VII deficiency, brain stem lesion, interstitial cystitis, MALS, SI joint instability, and some others…
What is something you wish you would have known when you were diagnosed?
I wish I would have known
...more about life as a person with a disability; a person that belongs to a minority - even though it’s a large minority.
...that I have to advocate for myself, and I don’t have to just accept being gaslighted by medical professionals.
... that I am OK the way I am - sick or healthy
...that I don’t have to ‘prove’ my value through achievements at work or sports.
...that I was simply enough as a person.
...that becoming ill and disabled is NOT the end. It’s just the beginning of a different life that can be as happy as any other life.
...that as much as I try, I cannot and don’t need to become my healthy self again.
...I am actually a better person now than I ever was before becoming ill.
How does it affect your daily life?
EDS and all my other conditions pretty much affect all parts of my daily life, but after over a decade, I have learned to adapt to all the symptoms in a way that I don’t notice my limitations during regular life. Once I get out of my routine and need to enter the ‘healthy, non-disabled’ world, my limitations become a lot more apparent. I truly believe if our society would be more used to people with disabilities and include them more often, I would not be this limited.
Let me give you some examples.
One EDS symptom that’s always present is chronic widespread pain. When I say widespread, I mean pretty much every part of my body hurts - some more, some less. My worst area is my spine, especially my neck and my lumbar spine. Both are severely unstable. So walking is tough some days because of my lumbar instability but sitting, driving a car, or worse, a bus, is sometimes impossible with my neck. Now, some days, you can’t walk, but you also can’t drive, which means, you simply cannot leave your house. If you still have to, for instance, see a doctor, you will face the consequences soon after, which for me usually looks like a day or several days with pain spikes and me being unable to leave my couch. A simple fix for an issue like this would be if doctors generally offer Zoom appointments - many did during COVID but not before. It would save me so much energy and pain.
Another problem I have especially during summer is that my heart rate fluctuates very much when I am standing, and I might faint if it’s too hot (postural orthostatic tachycardia syndrome). When I go out, for instance, to a grocery store, and I take public transportation, I often need to sit down. Oftentimes, all seats are taken, and even if I find one, it doesn’t take more than two stops until an elderly person asks me to get up (and I have a hard time arguing that I need to sit too). Granted, this is mostly a problem I have with myself. However, it is also something society teaches us. It’s this misconception that one needs to see an illness or disability. There is no such thing as an invisible illness, especially not if you are young.
EDS affects my mental health as well. Often, it’s frustrating to lose certain abilities from one second to another. Since EDS fluctuates so much, I can go from being able to do certain activities to having severe flare-ups the next day. Additionally, of course, chronic pain itself is affecting my mood as well. However, the worst part on my mental health is the constant ‘pretending.’ Again, since the people around us often cannot deal with chronic illness and feel uncomfortable around me, I tend to simply say, ‘I’m OK’ whenever random people ask me how I am feeling. Sometimes, it’s not only strangers I pretend to be fine for; it’s also family and friends, just for different reasons. People I love and that love me can get really worried if my health goes downhill, and if they worry, I feel even worse. So sometimes, I smile through the pain and pretend to be fine. But playing this role of the strong person that’s always just OK no matter what happens can be extremely straining and exhausting.
EDS affects my life in many more ways, but maybe these few examples show how many hurdles chronically ill people have to face every single day. And often, it’s a combination of several.
How are you doing now with symptoms etc.?
That’s almost impossible for me to answer. I have so many symptoms on a daily basis from all of my conditions. One day, one symptom is dominant; the other day, another symptom is the worst. No day goes by where I feel fine, but after 11 years with EDS & Co, I managed to find coping strategies that allow me to put aside my symptoms for parts of the day and focus on something else. They don’t ever go away, but they are less in the foreground. My main symptoms most of the time are related to my neck instability; for example, my arms are getting weaker and weaker over time, my skin is numb, my vision might get blurred. Then there are other symptoms from the mast cell activation or POTS, which, in my case, mainly cause gastrointestinal issues and heart rate fluctuations. Then, I have typical EDS issues like chronic pain, fatigue, temperature dysregulation, brain fog, bladder issues, dizziness and so on.
All in all, I would say my symptoms are getting slightly worse every year, but I found ways to accept and adapt to my issues.
Is there any other information you would like us to know about your illness?
In general, I think it’s important to recognize that EDS is a wide spectrum. People can be severely disabled from it; others might only have minor issues; and many are somewhere in the middle of the spectrum. But all these experiences are mutually valid. Nobody should be discriminated against for not being as sick as someone else - I genuinely hate if people with chronic illnesses compare each other. Even worse, I hate it if somebody tells me, ‘Well, you can be happy it is not cancer.’ Of course, I don’t want to have cancer. And of course, I appreciate all the abilities I still have, but life is still pretty challenging, and whatever illness someone has, for that specific person, it is incredibly challenging. I also would like people to understand that many illnesses - even common ones - might not be visible to the outside world. So why don’t we all just stop judging others? We can never know how someone feels unless we actually walk in their shoes.
What piece of advice do you want to give readers?
How can someone show support?
I believe the best ally actually gets educated about the condition and does this without me asking for it. I can’t tell you how much I love my friends who tell me they read one of my articles or even my blog in order to understand me better.
How can readers connect with you?
Journalistic Portfolio: www.karina-sturm.com
Bilingual Blog: www.holy-shit-i-am-sick.de
Film Site: www.we-are-visible-film.com
Guest Chronic Illness Blog coming soon! Guests will be asked to provide information about their illness and must haves while experiencing pain and other symptoms.
Samantha Bowick, MPH is the author of "Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options" and "Living with Alpha-1 Antitrypsin Deficiency" as well as a fellow sufferer of multiple chronic illnesses and patient advocate.Write something about yourself. No need to be fancy, just an overview.