Martin Nevin cares for his wife Evie, who has Ehlers-Danlos syndrome (EDS).
The couple’s two young children also have the condition which affects the connective tissues that support the skin, bones and blood vessels.
“Even unwashed and medicated up to my eyes, Martin makes me feel like the most beautiful person in the world,” says Evie, who is in constant pain.
Martin, a videographer, runs his own production company. He would like to spend more time at this to help with high medical costs, but family always comes first for this dedicated 30-year-old health hero.
1) What is your proudest achievement?
“Winning Cork Carer of the Year is my proudest achievement. Being able to help make someone’s life a little easier is one of the most rewarding things you can experience. To have someone go out of their way to see me recognised for my efforts is very humbling.”
2) What motivates you in your work and life?
"My family motivates me. I want the best for them, be it financially, medically or mentally, I strive to give them the best possible life I can. I can see the great wealth of talent my wife and children have and what I want more than anything is for them to be able to utilise it. Evie is probably one of the best resources in this country when it comes to EDS. She gives advice to people with it."
3) What do you do to keep mind and body healthy and well?
“When there are so many big problems in my life, I find the greatest way of maintaining health is to truly take the time to appreciate the small things. While having to be home most of the time is far from ideal, it has allowed me to be there for every milestone in the kids’ lives.”
4) What are the most important factors to maintain a healthy society?
“It’s about affording people the ability to make themselves happy. True happiness is earned and not given. But to be able to have that success, you need support with your health in the form of hospitals and doctors.”
5) What needs to be done in Ireland to achieve this?
"Education is important. Everyone should have access to third-level education, regardless of income. In Sweden, third-level education is free to anyone in the EU."
6) What do you think is the most pressing health issue in Ireland today?
“The biggest issue in our health system is the structure of the two-tier system. It really goes against families with chronic hereditary conditions. Private patients are being seen before public patients even if the public patient is in need of the same care. We need patients to be seen based on their need, not on how much they can pay. The consultants in Ireland who happen to have a good knowledge of EDS are private. Evie had to go private for a pain specialist because the waiting times were ridiculous. We paid €1,200 recently for a 15-minute procedure.”
7) How do you think the Minister for Health needs to tackle this?
“The Minister needs to sort out what is happening in our hospitals. The best course of action is to have private hospitals for private patients and public hospitals should be for those who can’t afford insurance. That’s if we can’t abolish the two-tier system. Ideally, it should be based on assessment of need. The Minister also needs to acknowledge that there is no help in Ireland for patients with EDS. We need multi-disciplinary teams.”
8) What do you do to relax and unwind?
"Evie and I play computer games together after the kids have gone to bed. Or we watch a movie or a series on Netflix. We believe the couple who game together, stay together. Gaming allows us to spend time together while enjoying something we both like."
9) What makes you laugh?
“Blatant honesty, especially from the children. They come out with the funniest things. I also get a good laugh off people who are unfiltered.”
10) Where would you like to live other than Ireland and why?
"We would love to move to Italy. Ireland is one of the worst places in the world to live if, like Evie and the kids, you suffer from the effects of low air pressure – such as migraine and joint pain. Italy is the ideal place to live because the healthcare system is better, there are doctors who are EDS-aware, the cost of living is lower and the climate is better. Plus, we could never afford to buy a house in Ireland. Buying in Italy is more realistic. Also, living in a better climate would mean Evie could work part-time. Her dream is to open a retreat centre for patients with EDS."