My name is Martin Nea. I am from Kllucan, Co. Westmeath. As a child I had very bad eyesight and I was sent to St. Joseph’s school for the visually impaired in Drumcondra at the age of seven. I learned all my subjects through Braille. Over the years my eyesight improved and then I had to relearn everything through sighted work.
When I was in my mid twenties I was traveling in a car as a back seat passenger and we were involved in a car accident. As a result of this accident my right eye (which is my good eye) began to haemorrhage. I was sent to the Eye & Ear Hospital in Dublin. During my time in hospital a number of tests were carried out on me. I reacted badly to one of these tests and from this it was diagnosed that I had Marfan Syndrome. I never heard anything about this condition before in my life, despite that fact that I was 6ft 7” tall, very slim and had dropped lenses since birth. The Medical Staff informed me that I would need to have my heart checked at some stage in my life. As I was a young man I did not give much attention to Marfan Syndrome, and I was not aware of the seriousness of this condition. I am a member of a large family. I have nine brothers and two sisters. None of my family is affected with Marfan Syndrome. I am what they call a “New Mutation”. Most of the time the Marfan gene is inherited from a parent, who is affected. About 25% of cases occur as the result if a spontaneous mutation, which is what happened in my case.
One week after I was discharged from hospital my eye began to deteriorate again. When I went back they discovered that the retina in my right eye had become detached. Thankfully, that operation was very successful and I returned to work within six weeks.
I had no further complications for the next fifteen years and I did not even need to attend a doctor. In 1996 I was feeling unwell and I went to see a doctor. As this was my first visit to this GP, I had to give details of my medical history. I mentioned that I was told some years ago that I had Marfan Syndrome. At this stage I did not know anything about this condition. Thankfully, the doctor was very familiar with this condition and she immediately checked my heart and told me that I needed to see a Cardiologist as soon as possible. It was discovered that my aortic valve was leaking and that I had an aortic aneurysm. Within a couple of months I had very successful Aortic Root Replacement Surgery.
Within two years of my heart surgery I had detached retina in my left eye on two occasions. Thankfully, the second eye operation was successful. At this stage, my wife Mary and I began to research and learn about Marfan Syndrome. We got in touch with the Marfan Syndrome Association in the UK and we discovered that there were a number of people in this country affected with this condition. We contacted them regarding setting up a Support Group in Ireland. Both Marfan Sufferers and their families were very interested in having a Support Group for Marfan Syndrome. As a result of this The Marfan Syndrome Support Group was set up in Ireland in 1997.
Although Marfan Syndrome is a serious medical condition I am able to live a normal life and continue to work. I have my heart checked every six to twelve months. However, I suffer from fatigue and migraines quite often and this curtails my life somewhat.
Having a deep relationship with The Lord Jesus Christ in my life had been my rock through all of this and will continue to be. I honestly believe that God created and formed me, that He love and adores me and that He will always be there for me.