Martin's Story

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.