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My Story - by Anita Crawshaw

Growing up I was THAT kid, the one that was always falling over and hurting herself. You’d think I’d have more co-ordination considering I danced from a very early age. On my 10th birthday I fell over running across the road and broke my arm. I spent my birthday at hospital. Not the greatest of birthdays.

I can’t tell you how many ankle sprains I had as a kid. Because my Dad is a doctor and Mum a nurse, they would ice my ankle, strap it up and give me some painkillers - and that was the extent of any therapy. Perhaps they strapped it too well because I never ever saw a physiotherapist.

It wasn’t until I started physiotherapy school that I learned how to fix myself. I remember we had only one very memorable tutorial on hypermobility. When we did the Beighton Score (measure of joint hypermobility) on each other, I remember people saying that I was a freak because of how hypermobile I am.

Up until that point, I thought I was normal. A common phrase I hear from my clients.

I was also that kid that seemed to be allergic to life. I developed severe asthma from 18 months old. I remember one time at age 6 panicking in the middle of the night because I was actually struggling to breathe. Even my parents were scared. In this case I was lucky to be the daughter of a doctor because even with a frantically rushed trip to after hours and a long time on a nebuliser, I managed to narrowly avoid a hospital stay because the doctors trusted my parents to look after me. I was always sick with throat and chest infections and my hay fever meant that my eyes could be so puffy and swollen that I could barely see.

When I was about 10 I started developing crippling gut pain. It was so bad that I would be curled up on my bed for a couple of hours until it passed and I was able to stand up without pain again. This continued on for years and when I saw my GP at age 18, she told me I had IBS (Irritable Bowel Syndrome) and there wasn’t anything I could really do about it.

About this time my right TMJ (jaw) started to dislocate and lock regularly. I consulted a maxillofacial surgeon who told me that if I did strengthening exercises and avoided very hard foods, it would stop dislocating. It didn’t.

From about 16 years old I started to feel dizzy easily, especially when standing up too quickly or on hot days. I have fainted a lot throughout my life, in very embarrassing situations that I can now laugh about. One hot day at physio school I woke up late, had no breakfast and ran down the hill to the hospital. I remember standing around a patient’s bed with students, doctors and nurses and then suddenly felt really unwell and dizzy. I woke up in the nurses’ station, having now become a patient instead of a student.

Another time, I was traveling around Europe at age 24. Our Contiki group were visiting the Monte Carlo Casino in Monaco, which is a very extravagant and opulent place. I hadn’t been feeling well that day so I didn’t have any alcohol that night. I remember the room suddenly feeling very hot and stuffy and feeling very sick. I went outside to get fresh air and fainted in the middle of the courtyard. I woke up to a group of people speaking French around me, no doubt speculating I had passed out drunk.

Over the years I’ve learned strategies to manage my hypermobile joints, gut pain, allergies and fainting (POTS). As luck would have it, in my early years there have been a few hobbies I participated in that have assisted me greatly in my hypermobility journey.

I was fortunate to dance from the age of 4 and learned ballet, jazz and a bit of Irish Dancing. As a teenager I danced hip hop and as an adult my focus shifted into Salsa, Latin American and contemporary forms. My exposure to varied dance styles has taught me a lot about how my body moves and has contributed to improving my balance, proprioception, strength and stamina. Needless to say, these skills learned from a young age have been highly valuable with stabilising my hypermobile joints.

I learned piano from age 9. I passed grade 8 in my teenage years and then actually went on to teach for a couple of years as an adult. I credit my piano training for the reason that my fingers are now stable and strong. I truly believe that if I hadn’t learned piano I wouldn’t have had the hand strength needed to become a musculoskeletal physiotherapist.

My dance training also helped me with the ability to stand. Yes you read that right, to stand. Something that most people take for granted. Standing for people with hypermobile joints requires a lot of effort and becomes painful after a while. The posture and balance I learned in ballet helped me to understand and activate the right muscles to stabilise my joints and prevent standing from being painful.

Despite being a trained physiotherapist I thought most of what was wrong with me was somewhat common, living with a series of unrelated conditions. It wasn’t until much later in life that all the dots were connected and I was diagnosed with hypermobile Ehlers-Danlos Syndrome. From then it naturally became my special interest area, for which I developed a real passion for helping others so that they wouldn’t have to go through the same sort of confusing tale I have.

It is a humbling experience to provide this much needed treatment and education to others so that they can develop the skills needed to lead a full and functional life. I am grateful for the lessons I have learned along my life’s journey, this has ultimately culminated in me being able to understand and transform many of my clients lives.

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Nursing my broken arm at age 10. Little did I know back then that the Zebra would become the international symbol for Ehlers Danlos Syndrome.

Enjoying a team photo following a successful salsa competition at the nationals. (Myself on the far right)

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Dancing in a ladies salsa / cha cha performance team. (Center)

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