Spotlight on members of our community living with neuromuscular conditions: Eoghan Curry

Eoghan Curry

Over the coming months we’re sharing spotlights on individual members of our community who are living with a variety of neuromuscular conditions. We began on Rare Disease Day, 29 February, to draw attention to the fact that rare disease isn’t just for one day. By sharing individual stories and information on their conditions, we want to raise awareness about the many neuromuscular conditions experienced by the diverse members of our community to whom MDI offers support. Special thanks to Eoghan Curry for sharing his story and raising awareness about facioscapulohumeral muscular dystrophy (FSHD). The spotlights will be added to a dedicated page on our website so that you can learn about people’s experiences of living with each condition.

Name: 
Eoghan Curry.

Age:
42.

County:
Dublin.

Type of neuromuscular condition:
Facioscapulohumeral muscular dystrophy type 2 (FSHD2).

At what age were you diagnosed?
29.

What were your first symptoms?
I lost the use of my right shoulder when I was 19. Then, when I was in my late twenties in 2009, I had issues with my left shoulder. I went to a shoulder specialist who referred me to a neurologist who ran all the tests. He brought me to the muscular dystrophy clinic in Beaumont in 2010 where I received a diagnosis there and then. Then I had more tests and received a genetic diagnosis in 2013. Facioscapulohumeral muscular dystrophy type 2 accounts for approximately 5 per cent of all cases of FSHD.

Do you have other family members who have the condition?
Yes. After I got diagnosed, my mum got diagnosed. It comes from her side. My sister doesn’t have it, but my auntie did. She was a great advocate for getting things sorted.

What do you find to be the greatest challenges in living with your condition?
Lack of resources. getting feedback, advice, and knowledge from the medical professions in general. Sometimes muscular dystrophy can be confused with multiple sclerosis. Overall, there is a lack of knowledge and awareness of muscular dystrophy. For example, you have to explain to social welfare what muscular dystrophy is. And there is a need for physiotherapists who specialise in neuromuscular conditions.

Is there anything you’d like people not to assume about you because you have the condition?
Not to assume we’re useless or incapable. Like most people who have disabilities and conditions, we are warriors, and we adapt and are problem solvers. We can achieve what we want to achieve. Nothing’s ever stopped me to getting where I wanted to get.

What are your greatest accomplishments?  
I wanted to race or sell cars. I couldn’t afford to race them so I ended up selling them. For me, getting a job as a junior salesman with Porsche was a great accomplishment. It was amazing to get in the door. Then, when I worked with Fiat and Mitsubishi, I looked after everything working in a garage and I also enjoyed helping elderly customers tax their cars.

Also, I was an adventure scout leader until I got into the motor trade and gained life-changing skillsets through this

How has living with your condition influenced you into becoming the person you are today?
It has made me more aware of the challenges that affect people with muscular dystrophy and other conditions. When something doesn’t make sense or is wrong, I have to ask the question, ‘why?’ and I have to fight it all the way.  I’ve won four out of five battles with the state for my social welfare rights.

Is there anything you’d like to say or offer as advice to a person recently diagnosed with the condition?
Do as much activity as you can. If you can get into a good gym where they can alter your exercises, do. Keep your head up if you can. Every day is a good day.

I have a limp from breaking bones and injuring ligaments. I get told sometimes that I walk with a strut … that’s my limp. Having the condition makes you more empathetic and understanding. There’s a huge community out there of people with other conditions. Never give up!

What do you want the world to know about your condition?
For muscular dystrophy in general, there is no cure. So we need help. It needs to be taken seriously.  

Muscular Dystrophy Ireland supports people living with FSHD and many other neuromuscular conditions. If you have any questions, you can contact us on our Information Line on +353 01 6236414 or on http://www.mdi.ie/contact.

Our colleagues, Muscular Dystrophy UK, have developed very helpful information about the condition. You can find out more about FSHD here.

Disclaimer: The views expressed in the content are solely that of the interviewee and do not necessarily reflect the views of MDI. Furthermore, please note that while MDI shares information about neuromuscular conditions, we do not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.