Michelle O’Sullivan from Hypermobility Connect shares her health journey with Hypermobility and Ehlers-Danlos Syndrome…
1. Tell us a bit about yourself!
I’m a 33-year-old, creativity-loving, web designer, and doting aunty.
I run an online community, Hypermobility Connect, which aims to educate & support people with hypermobility conditions to manage their condition, as well as raise general awareness of these conditions.
Prior to starting Hypermobility Connect, I owned a successful Private Occupational Therapy Practice on the Northern Beaches of Sydney, specialising in hypermobility conditions in both children and adults. I stopped this in 2014 after some pretty big health setbacks and decided that an online community would allow me to share my own personal knowledge in a way that was manageable for me.
I’m also a Web Designer, which I love, and it helps pay the bills. I love the creative side of it and not so much the code!! Art & design has been a great outlet for me as I have learned to live with my condition. I’m also an avid amateur photographer, taking black & white photos and posting them to my Instagram for a few kicks.
And probably best of all, I am an aunty to four beautiful nieces ranging from 4 months to 9 years old. Aunty time is the most fun time, and definitely the most meaningful.
2. What is Ehlers-Danlos Syndrome?
The Ehlers-Danlos Syndromes are a group of genetic connective tissue disorders. There are 13 different types of Ehlers-Danlos Syndrome; I have Hypermobile Ehlers-Danlos Syndrome.
Hypermobile Ehlers-Danlos Syndrome (hEDS) can cause a range of symptoms including full and partial joint dislocations (due to joint instability), cardiovascular and gastrointestinal problems, chronic pain and fatigue. There is a range of other conditions that are often seen in people who have hEDS, including Postural Orthostatic Tachycardia Syndrome, gastroparesis, and sleep disturbances.
3. How common is Ehlers-Danlos Syndrome?
Experts are actually unsure at this point in time about the prevalence of EDS. The Ehlers-Danlos Syndromes as a group are seen to fit within the “rare diseases” classification.
The Hypermobility Spectrum Disorders is another group of hypermobility related conditions that are similar to hEDS. These are believed to be more common, however their prevalence is also unknown.
4. When and how were you first diagnosed?
My journey to diagnosis was a long one.
I first started having musculoskeletal problems when I was about 9 years of age. At that stage I was playing a lot of high-level sport, and the aches and pains were put down to growing pains and sport related injuries.
From 10-12 years of age I had recurrent issues with my knees, again put down the netball and growing too quickly. But when I started high school and had to walk up and down flights of stairs countless times each day, we knew I had a problem. Getting stuck in the stairwell with a knee that was locked was a pretty big red flag. After seeing a specialist and getting booked in for surgery at the ripe old age of 12, we also discovered that back when I was 10 I had fractured my patella in 8 places and the X-rays didn’t pick it up!
Throughout high school I had 4 surgeries, had to stop playing sport (overnight) and started also dislocating my shoulders. We recognised at this point that I was hypermobile, but didn’t realise to what extent and what else was ahead. I also developed Complex Regional Pain Syndrome (CRPS) but that is a whole other (related but long) story!
Fast forward to 22 years of age, I met someone else with Ehlers-Danlos Syndrome (the Classical type) and realised how similar our bodies were. At that point, I recognised I probably had it too. I spent days Googling and trying to find someone who could make the diagnosis either way but couldn’t find anyone in Australia.
I was going to London for a university placement for my course, so I booked an appointment with the world’s leading hypermobility specialist and was diagnosed at 23 years of age with Hypermobile Ehlers-Danlos Syndrome.
Since then I have gone on to require a lot more surgery, and have racked up a total of 12 to date. I have also experienced a lot of what they call the “extra-articular manifestations”, that is, the non-skeletal problems. For me these have included gastrointestinal issues, food intolerances & allergies, POTS, migraines, and headaches to name a few.
5. Do you need to undergo any regular treatment?
At present I see my physiotherapist once per week for maintenance, and more often when something goes horribly wrong (which is frequent). I take regular medications to help manage inflammation and pain.
I see a psychologist to help me manage the emotional toll having a chronic health condition can have on you.
And then it’s just the usual rounds of Rheumatologist, Geneticist, Cardiologist, Neurologist, Orthopaedic Surgeons when necessary.
6. What effect does Ehlers-Danlos Syndrome have on your ability to exercise?
There are regular exercises that I have to do to keep my joints as stable as possible. In addition to this, I am able to go to the gym twice a week and use a cross-trainer / elliptical trainer for anywhere between 10-30 minutes, depending on the day and the latest injuries.
I have had to stop all other forms of exercise. I can’t go for long walks, I can’t swim, and I can’t ride a bike. I am luckier than most with hEDS. To others, being able to go to the gym and do any cardiovascular exercise at all is seen as a luxury. Most aren’t able to do that.
Not being able to exercise very much obviously puts strains on other body systems, and does not help the management of weight, which is really important for managing this condition. It’s a hard one to combat, that’s for sure.
7. You’ve written a children’s book around hypermobility. Can you tell us about it?
I wrote a children’s book My Bendy Body – Living with Hypermobility, when I was practising as an Occupational Therapist. I kept encountering families who didn’t know how to explain hypermobility to young children, and to those who care for them. To help them, I wrote this colour illustrated book which helps children (and adults) understand that while they may not be able to do everything that others can do, they “still can”… just in modified ways. It was such a success in English that I had requests to translate it into to Swedish and Spanish. The next translation will hopefully be into French. You can read more about the book here: www.mybendybody.com I am hoping to release another book (for adults) in 2018 which goes into a lot of detail about the journey of living with hypermobility.
8. What advice would you give to people living with hypermobility?
The advice that I give these days in personal advice, sharing from my own lived experience of Hypermobile Ehlers-Danlos Syndrome. I think the biggest lesson I have learned is “I am not my condition”. I live with a chronic health condition, but I am not Ehlers-Danlos Syndrome. I am me. It’s such an important lesson to learn, and we each get there at different stages, and in different ways. But to be able to recognise that I am a person, just like everyone else, and I happen to live with a condition that impacts how I live but doesn’t have to stop me living, is SO powerful and life-changing.
When first diagnosed with a chronic condition like Hypermobile Ehlers-Danlos Syndrome, it feels like a life sentence. It feels like nothing will ever be the same. But over time, with the help of a psychologist and the rest of your treating team, as you start learning how to manage your condition, you can start clawing your life back. I was someone who was quite physically and psychologically disabled by my condition (before diagnosis, and for a few years afterwards), but I don’t feel that way anymore. It takes a lot of work, and a lot of determination, but it’s possible. Even if it’s not entirely possible physically, the psychological aspect is more than half the battle. If you can change how you think about this “life sentence” then you’re setting yourself up for a better life. You can do it. I know you can!
A little more about Michelle
Thank you so much Michelle for sharing your story with us!
Do you guys have any questions for Michelle? Pop your question in a comment below!