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The Journey To My Truth: Living with Ehlers-Danlos Syndrome

Ana_yoga_teacher_stuttgart

Reading time: 18 minutes 

Dear Ana, welcome and thank you for sitting down with us.
Tell us something about yourself…

My name is Ana and I’m 34 years old. I was born in Melbourne, Australia. I moved to Stuttgart when I was 10 years old, with my parents. I spent 3 years in California in my twenties, which makes it 22 years of living in Germany. I’ve been teaching yoga at OM Yoga Stuttgart for 3 years.

I have a 7 year old daughter, Audrey, and it was after pregnancy and her birth that I discovered I have a health condition called Ehlers-Danlos Syndrome, a connective tissue disorder, genetically inherited, which causes the collagen, which forms the building blocks of the entire body, to be made inadequately.

Essentially every part of my body, my muscles and skeleton, my skin, my hair, my internal organs, my blood vessels – every single part of me – is made with faulty materials. It’s like I’m assembled together with really weak glue.

How did you find out about this condition?

It was a long and tortuous process to get my diagnosis. It all started with my daughter’s birth which was really fast and surprisingly pain free.

After giving birth I started experiencing a really strong back pain, which kept getting worse and after months still wasn’t gone. I went to a number of different doctors in California. First they all suggested that I go to a chiropractor, which did nothing to improve my condition, then they did basic X-rays but couldn’t find anything. 

So the answer I would get was “being a new mama isn’t easy (at the time my ex-husband was in the Marine Corps and away a lot) so all this is probably just stress related.” I was essentially brushed off, nobody took it seriously, nobody took time to look.

What happened next?

I ended up separating from my husband and coming back to Germany to have family nearby.
I remember, as I got off the plane wearing my daughter in slings, my parents were horrified when they saw me: I could barely walk, I looked like a physically disabled person.

I went to a hospital here in Germany and did all sorts of tests. A few days later I get a phone call from the orthopedic surgeon saying, “We’ve been looking at your imaging work and… HOW CAN YOU POSSIBLY WALK?! Your sacroiliac joint has been ground away to nothing. It doesn’t exist anymore and you’ve developed the worst case of arthritis we’ve ever seen in this particular area of the body, and that’s including all the elderly people we see.”

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Ana and a baby Audrey in California in 2014

Getting an Ehlers-Danlos Syndrome Diagnosis

Wow, so that’s when you got your diagnosis?  

No, in fact the reason why I had developed such a severe condition was a still mystery to the doctors. They had no idea why this had happened. One possibility was that the birth had been so fast that it had caused trauma, but nobody was sure about anything…

I ended up getting surgery to place a metal screw in a joint to essentially hold my pelvis and my spine together. It was a 6 month recovery period during which I was either in bed or on crutches. And yet I didn’t have an answer as to why I was suffering so much.

I guess you had to find that out for yourself? 

I did. Despite having this huge procedure done – I’m the youngest person in Europe to have had this kind of surgery – it did nothing to help me. So I just kept going, seeing every kind of doctor: I saw sports doctors, orthopaedic specialists, rheumatologists… and I kept getting the same reply from them: “There is nothing wrong with you!”

The advice I would get from them was to exercise more, get strong, build muscle. Mind you that once I healed from the surgery and I was able to walk again, I came to the studio for the first time. I’d done yoga before and always benefited from it so as soon as I was able to move I came here. 

At that point I was coming to yoga five times a week; I had a regular practice despite the pain. At home I did Pilates and core work every day because I knew that would help me and I was keen on following the advice from all the doctors. So I was physically very fit, I had muscle definition. But the doctors would always be like, “You need to build your muscles, I’m guessing that you don’t do much sport…”

It was just very dismissive and because they couldn’t find what was wrong with me, they went down the mental/emotional route, fishing for clues as to why I was going through all that pain. I was advised to see psychotherapists and explore psychosomatic illnesses, but I didn’t do it because I knew it wasn’t that. 

I’m not dismissing mental illness; I’ve had depressive phases before and I know what it feels like. But this wasn’t that. This was physical.

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So these doctors couldn’t find an answer to your problems and kept on suggesting possible explanations…

Exactly. And then more symptoms started creeping up. After I turned 30 my skin got very fragile; I would always bruise easily and it was like butter: if I would graze it very gently with a knife it would cut and bleed extremely. My hair started falling out, I started collapsing… it wasn’t just pain, my entire body felt soft, unstable. The circulation throughout my fingers and toes went away, my hands and feet would go numb. I started having extreme headaches, not just like normal episodes but headaches that would knock me down completely. 

At that point I started seeing rheumatologists suspecting I had Lupus, because a lot of the symptoms looked like it. I also had multiple blood tests done just to make sure I wasn’t lacking anything. I’m 90% vegan and of course people were saying, “Maybe you’re lacking Vitamin B12 or iNOS.” So I’d go and get my tests done and they would all come back fine except for extremely low white blood cell count. So my doctor thought that could be Lupus or aplastic anemia or Leukemia. Scary things…

I ended up getting tested for all of those conditions and all the tests came back negative, which turned again into, “Oh, you need to add red meat to your diet” or “It’s psychological, it’s stress…” 

And that’s when I said, “OK, this is bullshit, there is SOMETHING going on.”   

I started researching online (I know it’s generally not good to ask Google but sometimes we just have to). I typed in all of my symptoms and then “rare illness” and I stumbled upon this thing called “Ehlers-Danlos Syndrome” (EDS) and everything sounded exactly like me, right down to the fast birth! 

Women with EDS experience extremely rapid labor and all these seemingly unconnected physical symptoms called genetic markers. For instance, my palate inside my mouth is very high and very narrow, I have an extra fold on my eyelids, I have interesting marks on my heels, I have cellulite and stretch marks that I’ve had since I was a child that had nothing to do with weight gain or weight loss, my skin is very soft and very stretchy: a collection of weird things that seem completely unrelated but when you put them all together they form this picture that perfectly matched my experience. I was reading about other people’s journeys and they sounded just like mine. So I made an appointment with this world-renowned specialist in London, Dr. Alan Hakim, a rheumatologist. I had to wait five months, during which I kind of came to the conclusion that I had EDS but wanted to get an official diagnosis nonetheless.

So I went to this appointment in London and as I walk through Dr. Hakim’s door he goes, “Yes, you’ve got that.” Because all people with EDS look how I look, which is really interesting because no one in my family looks like me. 

But if this is genetic how did it get to you if nobody in your family had it? 

No one else in my family has it the way I have it. It seems that both of my parents had it recessive, and it came out in me. I can be the first of a new line. 

Ana as a toddler and child in Australia, and teenager in Germany

Ehlers-Danlos Syndrome: the importance of validation and receiving the right therapies

How did it feel to finally hear a comprehensive diagnosis after all those years? 

I’d always known that something wasn’t quite right about me. Since I was a child I always experienced pain but the narrative I made up for myself was: I just need to toughen up. Everyone can deal with it but for some reason I’m just this weak, high-maintenance, emotional person that struggles with life more than other people do and I just have to deal with it and move on. 

So getting my diagnoses was actually really good, in the sense that it changed my whole narrative, it lifted this image I had of myself being this difficult person and in fact it flipped it on its head and I started seeing myself as a very strong person who managed to get through this for so long…

The importance of awareness and validation to start a healing journey…

It made me finally feel like someone was actually listening to me and I’m actually dealing with difficult stuff and I’m not just creating problems myself or struggling with things everyone just easily gets on with. Things actually are a little more difficult for me. I’m essentially always working to keep my body upright, which is why I struggled with fatigue my entire life: I’ve always been tired. 

So gravity hits you way differently than everyone else…

Yes. Now I’ve been doing it for many years so I’m used to keeping myself upright but my body is constantly working really hard just to keep me from falling.

How long was it from giving birth to the final diagnosis?

Audrey was born in 2014 and I was diagnosed in 2019, so: five years. A lot of people who have EDS find that after pregnancy things start escalating, or as they get into their thirties things go downhill, which is exactly what happened to me. I gave birth when I was 27 and right after that there was a drop and the same happened right after I turned 30.

You say that, after receiving the final diagnosis, you felt validated. What changed in terms of physical fitness, did you start receiving treatments that were appropriate to your condition?

Yes, Dr. Hakim was able to set me up with a network of specialists for all of my different symptoms. A cardiologist is treating my heart murmur. I can finally do cardio workouts but for many years I wasn’t able to because I would feel sick after 30 seconds. 

A metabolic specialist, who was able to determine that my mitochondria don’t work properly and told me that I can never skip a meal. He also gave me a long list of supplements that I take every day. This helped me make sense of the fact that I’m always hungry. A physiotherapist (I’d been to many physiotherapists before) who is the only one who is effective. She has EDS herself and when I go see her if I show her where things are hurting she’ll be able to feel and say, “Oh, yes, your tailbone has migrated to the right” and she’ll gently put it back in. It’s not chiropractic work but she feels when things have moved, because my skeleton is always moving. 

A pelvic floor specialist, also in London, who was able to diagnose my prolapses. I have a headache specialist there as well who gives me Botox injections, which haven’t been very effective so far so we are working on different procedures, trying everything out. Eventually we’ll come across something that works and if we don’t then I can get some nerves killed in my head. Oh, and through all of these scans on my head we also found out that I have a tumor in my brain which is completely not connected to EDS but needs to be monitored as well…

I find it incredibly inspiring and I’m just awe-struck that you can talk about this in the most nonchalant way. I can understand this intellectually – as someone who kind of knows the body – but then trying to put all the pieces together… Really, you are a miracle, it’s incredible.

I’m used to it. I live with it. 

Ana_yoga_teacher_stuttgart

Ehlers-Danlos Syndrome and Yoga

And what role does yoga play in your overall wellbeing? 

I mentioned before that I have these extreme headaches which no medication would help. The only thing that actually helps me with these headaches is taking a yoga class or teaching a yoga class. 

Do you have any idea why that is?

The headaches are a consequence of the fact that my cervical spine is loose and I also have some nerves in my head that are being compressed, so it’s an entirely mechanical/physical kind of pain. 

I think maybe because it’s such an intense focus – reciting the dialogue, teaching the class – I have to fully focus on something else. And I also believe that the fact that I’m showing up for others have something to do with me not feeling the pain anymore. 

So you’re saying that by performing an activity that takes all of your focus somewhere else, your pain that is purely physical, “neurological,” just goes away?

It does. It’s so interesting: both teaching and practicing yoga. 

And does this happen also with other kind of activities or disciplines or only with yoga? 

In general, I have discovered that the best thing for me to do when I feel really awful is not to lay in bed and do nothing but to refocus on something else. But the really effective way to get rid of it for me is to teach or practice yoga. 

I find it so interesting that for you teaching yoga has a similar effect on certain symptoms as practicing yoga. I’m sure you discussed this with your doctor… What is his take on this? And do you think that, based on your experience, certain kinds of activity and physical movement can become a kind of widespread supplementary therapy for your condition? 

They find it very interesting that the teaching, the focusing on something, getting into something while showing up for others, can help me so much with my headaches. They say it’s understandable because it’s completely redirecting my focus towards something else, but I’m not aware of any specific evidence as to why that happens.

In terms of the physical aspect of it, a lot of doctors and EDS patients say: No yoga! They say to do Pilates instead, do strength training, but don’t do yoga. In fact, a lot of people with EDS are very into fitness. The ones that are able to tend to train a lot because having muscles works as a brace. But there is a general misconception about yoga and I would often hear the argument that even if you can contort your body into acrobatic postures (due to the hyper-mobility), you shouldn’t do it because it’s going to hurt your joints. Often people think that yoga is all about twisting yourself up. But it’s not. You need to actually engage your muscles properly…

Fortunately, my doctors understand things differently and support me to do whatever makes me feel good and works for me. 

How do you think your yoga practice has changed thanks to all the inputs and information you receive because of your condition? For example, the doctors telling you to be careful going very deeply into postures… Do you think this has affected the way you practice? 

I think so. I spent my entire life listening to my body and thinking, “Oh, this part feels weird today…” so I’ve always been in tune with different parts of my body. Having to go through life with the feeling of being extremely tired, or in pain, or just awful, has also made me very patient and very mindful which helps with everything including the yoga practice. 

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Being a Yoga Teacher with Ehlers-Danlos Syndrome

How do you think your condition has influenced you as a teacher?

I think it’s made me more compassionate, it’s made me learn to be compassionate towards different people and different body types. Something I like to say when I teach is: “Remember that every day, every practice, every body is different. Embrace that, work with what you’ve got.”

Often students would come to me before class saying stuff like, “Don’t judge me, I haven’t practiced in so long” or “This part is hurting so I can’t get my leg this high today” and I’m like, “It’s ok! Work with what you’ve got, listen to your body and make it work for YOU.” So yes, I think it has given me an intuitive compassion and understanding for different bodies. 

And also with people who are a little sensitive and insecure, especially if they’re new students, I often share with them a little bit about my journey and I feel like that builds trust. I noticed that if they know a little bit about me, and that people might be going through different things, even though they may be invisible, they become more comfortable in releasing and letting go in class. I feel like when I share my story it takes away that intimidation aspect that “The Yoga Teacher” can have on students.

Teaching is also good for me because my condition has made studying and working not always easy for me. Even though I’m confident in my intelligence I find it pretty difficult to study because just reading a page often confuses me, the blood vessels in my brain make me feel overwhelmed when there is too much going on visually. So not everything is a good fit for me. In some jobs, I got fatigued or overwhelmed easily. But teaching certainly is good for me. That’s why I’m happy to teach as much as possible, it doesn’t fatigue me or stresses me out: quite the opposite in fact! 

What do you think of the yoga movement, what’s your take on our industry?

By just surfing through social media one might think that yoga is all about how it looks. It’s almost like a fashion accessory. Of course, it’s not, it’s actually about listening to your insides; it’s internal rather than projecting externally. 

I don’t even have or use social media so I am using yoga in a completely different sense. My Mom used to do yoga and meditation when I was a child because she struggled with some mental health issues when I was really young. 

She’s always known there was something I was struggling with and, even though she didn’t know what it was, she knew my pain was “real” in some way. 

She actually started teaching me some yoga and meditation when I was very young so it’s something I’ve always been exposed to and something I always understood the healing benefits of. 

So you didn’t get into yoga because you wanted to look good in leggings…

…but because it feels good. And maybe it is good that it’s become a millennial Instagram trend because it’s exposing people to it and even if you’re doing it to look cool, you’re still doing it and you’re benefitting from it even if you’re not realizing it. 

For example, I had a new student the other day. He walks in the Hotroom with shoes on, phone in hand and talking to me super loud with the door open. I said to him, please close the door, take your shoes off, leave the phone in the changing room and try to be still while you’re here: keep it simple. And he listened to me, he took it on, he actually listened to corrections, he listened to the dialogue and when he came out he was like, “Oh, I feel so good!” 

So even people who have no idea what yoga actually is about and even if they come for “the wrong reasons” they are still getting something out of it. Even if they might not immediately realize it intellectually, their bodies feel it. 

What is your wish for people suffering with EDS?

It would be awesome if it would be just a condition that people know exists and know the basics of. And that people who have it at least have access to adequate medical help and are not dismissed and tossed aside and even given harmful therapies. It is massively under-diagnosed because many doctors have never even heard of it. I find it especially difficult with doctors in Germany. The English-speaking world is more educated in it, but even there it’s still not widely known. 

One thing I’ve noticed in recent years is that a number of celebrities have come out with an EDS diagnosis, so more people are talking about it, there is a little bit more public awareness. But yes, I wish simply for people to have access to care. Because it’s not a nice thing to have but it can be managed if you understand what’s going on and you can learn how to take care of yourself. Of course it’s degenerative and there are things that can’t be helped, but there is a lot that can be prevented if you have the tools and an early diagnosis. You can’t get rid of it but you can live an enjoyable life despite it. 

I’m sure you asked Dr. Hakim a lot of questions about what comes next?

A lot people that have EDS are either bedridden or in wheelchairs or walk with mobility aids. 

There are two kinds of EDS: a form called vascular EDS that has a life expectancy of about forty years. With that form, the blood vessels are more affected and they rupture. The form that I have is called hyper-mobility, and my blood vessels are affected but not as much, so it’s something I just need to be aware of. My life expectancy is normal, I just need to keep an eye on some things. 

So I will continue with my daily yoga practice that has helped me incredibly in dealing with this condition over the years and I’ll try to spread the word on how to live with EDS and make the most out of the many great opportunities life presents me with.

Ana_yoga_teacher_stuttgart

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Facts about Ehlers-Danlos Syndrome

The combined prevalence of all types of Ehlers-Danlos syndrome appears to be at least 1 in 5,000 individuals worldwide. The hypermobile and classical forms are most common; the hypermobile type may affect as many as 1 in 5,000 to 20,000 people, while the classical type probably occurs in 1 in 20,000 to 40,000 people.

If you wish to learn more about EDS or wish to support visit 

https://www.ehlers-danlos.com/

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This article is part of the „Yoga Talk“ series where our teachers share their journey in yoga from a personal & intimate perspective. 

Here you find all the „Yoga Talk“ articles.

 

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