Jade was born in 1987, with Moebius syndrome, but didn’t know what it was for most of her life.
My mum tells me that when I was born, I was labelled with ‘asymmetrical crying face*’, however she thought the fact that I could and did cry, probably meant I was fine, and for practical purposes I was, so I was sent home with my perplexed mum and dad. I was a great baby. I slept, I ate, I pooed. And repeat. I did all the things that babies should, at check-ups I was hitting my milestones and performing well. The only thing was, that I was doing this, just with one side. My mum likes to tell the tale of the time she pretty much forced the GP to watch as she tantalisingly dangled a toy above me as I was laid on the play mat. I reached up for it, left hand first, and grabbed it victoriously! My lopsided grin wide. But then she held down my left arm and dangled again, this time I paused not knowing how to get the toy, I looked sternly at my right arm as if I was internally berating it for not knowing how to reach for a toy. It finally shot up grabbing the toy. And the GP referred me.
Not having a clear diagnosis, other than a woolly label of hemiplegia, my symptoms were treated individually. I had a severe squint for which I had two unsuccessful operations very young, I adapted to the unilateral vision and in time formed a habit where I pushed my eye outwards. When I revisited the ophthalmologist as an adult and pressed them to try newer treatments for squint – Botox injections into the eye muscle, my brain was now reliant on my adapted vision so the injections gave me double vision and were stopped.
When I was seven, I travelled to London to see a plastic surgeon who was one of the few doctors specialising in hemiplegia who took a nerve from my leg and implanted it into my face in order to give the right side of my face some kind of functionality. It served to lift the corner of my mouth enough to use drinking bottles without dribbling, but I was never able to make any expressions and it gave me some uncontrollable spasms every now and again. Twenty years later and living in London I blagged an appointment with one of that surgeon’s protégés who now gives me Botox injections into my cheek to stop these.
I was diagnosed with Moebius in 2016, so for 28/9 years I was only classed as having facial palsy/hemiplegia. I never quite knew what it was I was meant to say when people used to ask so I mainly said I’d had a neonatal stroke – not true at all I now know!
Last week I was lucky enough to have a private Bupa health MOT paid for by my work and they offered me a hearing test. The results caused concern for them and they have referred me to an ENT department for moderate hearing loss in my right side. The only other hearing tests as a child were through school and these I assume were fine only because I wasn’t referred to a doctor, so at no point was I aware I may develop hearing loss, or even that I should keep tabs on it.
Socially I was brought up like any other child, I wasn’t treated like I was disabled at home, which made me feel like, and socialise like a normal kid. I made friends easily but was obviously bullied too. People who didn’t know me thought I was disabled, and I would be pitied, or called names at school and out and about. This probably worked in my favour as I grew older and grew a thicker skin. The teasing made me the resilient person I am today, and I now consider myself extremely confident, and probably, on occasion, slightly arrogant if anything. Even now, I get pitying looks by people who confuse ‘Visible difference’ with ‘Disability’ but rather than upset me, it makes me want to prove even more how able I am. In life, and at educating them about their attitude to others.
As an adult these exchanges commonly happen by people serving me in a shop, they want to find out something about me like I’m of some interest to them, and then brush me off and not have to feel too guilty for asking because they’re serving the next customer. I’m more than happy to tell them I have a visible difference, not a disability, and explain in detail about Moebius syndrome, however this takes longer than the 10 second interaction they were expecting and can often make them uncomfortable. Sometimes it can draw in a colleague of theirs who I’ll happily explain to, I feel no shame in my looks and I’m glad people ask, but it feels like something they should be aware of rather than a spectacle. I’m hoping this story helps that.
I work in events administration for a Bioethics think-tank, mainly just office work, and I also do freelance Graphic Design and Illustration which is what I trained in. It’s more of a side-hustle these days as full-time jobs in the Arts are hard to come by and it’s a case of who you know for that. I don’t think Moebius has affected my career at all, but I think that’s down to me projecting myself better than I would have done 10 years ago.
I think care for patients could be vastly improved with better communication between clinical departments, or for the patient to have one advocate who liaises between departments would be a good first step. When I was growing up, I never saw anyone who looked like me or had had the same experiences as me. Even when I had plastic surgery, I don’t recall seeing case studies of previous patients, so knowing what to expect would be great, it probably would have helped me to have therapy or counselling.
*Asymmetrical Crying Facies is a type of facial palsy where when the baby cries, the mouth is pulled downward on one side while not moving on the other side.
Disclaimer: Please note that views expressed are person’s own and should not be considered a recommendation of particular medical treatments, therapies or surgeries. We would always advise you seek advice from a health professional with experience in facial palsy who can assess your individual needs.
Last reviewed: 28-02-2019 || Next review due: 28-02-2022