Spotlight on members of our community living with neuromuscular conditions: Emer O’Sullivan

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 Emer O’Sullivan for sharing her story and raising awareness about spinal muscular atrophy (SMA). 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.

Emer O’Sullivan

Name: 
Emer O’Sullivan

 Age:
27

 County:
Laois

 Type of neuromuscular condition:
Spinal Muscular Atrophy

 At what age were you diagnosed?
3 years old

What were your first symptoms?
I was very unsteady on my feet and began to fall a lot.

Do you have other family members who have the condition?
I have a first cousin who has spinal muscular atrophy.

What do you find to be the greatest challenges in living with your condition?
The constant need for planning and the challenges associated with getting adequate support to live independently.

What are your greatest accomplishments?  Moving to Dublin to further my education and obtaining a Master’s degree in Data Analytics for Precision Medicine.

How has living with your condition influenced you into becoming the person you are today? Having SMA has made me more assertive. Due to having a physical disability I learned that I need to accept help and tell people HOW they can help.

Is there anything you’d like to say or offer as advice to a person recently diagnosed with the condition? Everything is achievable, you just need to find the right support to reach your goals. Don’t give up, even if the path appears longer and more difficult.

What do you want the world to know about your condition?
SMA is a progressive neurological disease for which there are a number of treatments available. In Ireland, however, treatments are only available to people under 18 years old. Treatment needs to be made available for everyone.

Muscular Dystrophy Ireland supports people living with SMA 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.

You can find out more about SMA 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.