Limerick man Tom Hayes was diagnosed with a rare neurological condition called AMN in 2006, and is the only Irish person participating in a US trial of 'Lorenzo's Oil'. This is his story as told to Fiona Tyrrell
WHEN I TELL people I have adrenomyeloneuropathy (AMN) I get a lot of blank looks, but when I mention the film Lorenzo's Oilthey begin to nod in understanding.
I don't blame them. When I was diagnosed with the condition in 2006, it didn't mean anything to me, so of course I went on the internet. I learned that it was a rare condition that didn't have a cure.
At least I knew what was wrong with me, after four years spent trying to find out what was going on.
Back in 2002 I started having problems with my legs. It was mostly stiffness, and pins and needles. That was when the long process of trying to get a diagnosis from a variety of specialists began.
The first doctor I attended thought I was lacking in calcium; another thought I had an infection of the spine.
In 2004, I was referred to University College Cork, where I was tested for multiple sclerosis. Later I was tested for motor neuron disease at Beaumont Hospital in Dublin. That was a very worrying time.
Eventually I was referred to the National Hospital for Neurology and Neurosurgery in London, where I was diagnosed with AMN.
It is a condition that affects the long-chain fatty acids in the blood and causes a breakdown of the myelin sheath, which covers the spinal chord.
Basically, the signal from my brain is not going down to my legs properly.
My legs are very stiff. I have difficulty walking, and if I remain seated for too long they get rigid and will only loosen up once I get moving. I also experience heaviness in my legs and pins and needles.
I have MRIs every year to monitor my condition. My adrenal glands are also a problem, and so I get them checked every six months.
The condition is similar to MS and I don't know what the future holds for me. This uncertainty is particularly hard on my wife and family.
While there is no cure, research is being done with Lorenzo's Oil - a mixture of oils that is thought to normalise the long-chain fatty acids. It is not thought that Lorenzo's Oil would cure the condition, but it is hoped that it may go some way towards stabilising it.
The oil is very well-known because of a film starring Susan Sarandon about the family of Lorenzo Odone, a boy who had the childhood version of AMN. While I find the film depressing, it does help when I am trying to explain to people what is wrong with me.
I am participating in a four-year trial of the effects of Lorenzo's Oil, being conducted at John Hopkins Hospital in Baltimore, in the US. Around 120 people with AMN worldwide are involved in the trial.
I am now in year two of the study. I am on a low-fat diet to reduce my fat intake, and I take the oil first thing in the morning, around 60 ml of it. It is a bit like cod liver oil, but at this stage I am used to it.
Every month I go to the local hospital to get my bloods taken, and they are sent on to Baltimore. I have to travel to the US every year for check-ups. The hospital gives me $500 (about €350) towards my expenses, but that doesn't come near covering everything.
I don't know if I am on the placebo or on the real thing, but I have gone downhill since I started taking it. I don't know if I am wasting my time or not, but my options are limited, and I have to do something.
There are also trials ongoing in Britain investigating the use of cobra venom to treat the condition. Results from this trial are due by the end of the year.
I am employed by the civil service in Limerick. Work has been very understanding of my condition and I am very grateful for that. I can still get around okay at the moment, but down the line, I don't know what I will be able for.
I have to get on with it. I am the father of three young children, so I have to keep going.
People with AMN can be mistakenly diagnosed with MS, and I often tell people that I have MS. It is sometimes just easier.
I think of AMN as a first cousin of MS. I am a member of the MS society, I attend its patient group, and I get support from the society.
I am disappointed I do not get more help from the health service. Physiotherapy is very important to keep me flexible and moving. I go to physiotherapy every three weeks. I pay for this myself.
I have tried many other things, like reflexology, kinesiology and reiki, but none of them helped. I had to wait two-and-a-half years to see an occupational therapist.
If I had MS, I would have critical illness cover, but because AMN is so rare, my health insurer does not recognise it.
I am starting to make changes in my home to cater for my needs. I will have to move my bedroom downstairs, and change the bathroom.
I went to Lourdes this year with a friend who has lost his eyesight. When you go somewhere like Lourdes you realise that there are people who are a lot worse off.
To be honest, I feel quite isolated. My condition is very rare and I am not aware of anyone else in Ireland with it. I travel to London to meet with other sufferers of the condition once a year. I am the only Irish person who attends. It would be great to talk a fellow sufferer in Ireland, if there is one.
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