I would have kept growing if not treated

 

MY HEALTH EXPERIENCE:I have a normal life following radiotherapy in London, writes BRENDAN HOLLAND

WHEN I was growing up in Killeeshil, Co Tyrone, there was no indication I was going to become as tall as I did. I’m 6ft 9in but I have been told I could have grown another foot to be taller than Charles Byrne, the “Irish giant” of the 18th century, but for the excellent treatment I received when I was 20.

Byrne, with whom I discovered I have a common ancestor, was 7ft 7in and was the tallest man in the known world at the time.

My father and mother were of average height. My father was 5ft 8in and my mother was 5ft 7in. They had eight children and I am the second youngest.

None of my siblings grew abnormally and the tallest is about 6ft. There were no signs of gigantism in my family going back as far as we could go back, which is four generations.

I grew normally until I was 14 but then my growth started to accelerate. There is a family photograph from my parent’s 25th wedding anniversary that year and I’m taller than most of my siblings.

In my local school, St Patrick’s Academy in Dungannon, I was on the Cór na nÓg team when I was 13. By the time I was 15, however, I couldn’t even make the panel because my stamina and my co-ordination were so affected.

What I had was known as pubertal onset and it happened to me in about 1966. One of my brothers emigrated to England in 1967 and every time he came home he noticed a huge difference in my height.

I kept growing until I left college at 19, by which time I was 6ft 6in. As I continued to grow, I became more self-conscious, though nobody dared to make an issue of it because I was tall and I had good friends at school.

The condition delayed my physical maturity. One of the most annoying symptoms was the headaches that came with it.

I was also tired when I walked home from school and the only thing I wanted to do was sleep. The tumour was causing problems with my eyes and I was getting an occasional blackout. So I consulted my doctor.

I was admitted to the South Tyrone Hospital in Dungannon. They did investigations and diagnosed the problem as a pituitary adenoma, but they neglected to tell me or my parents the severity of the problem.

After I had emigrated to London in 1972, I visited a GP in Fulham who recognised my symptoms. I was diagnosed by Prof Michael Besser in St Bartholomew’s Hospital, who is a world authority on gigantism.

He asked me if I had been to hospital before and he got back the records from Dungannon. He diagnosed me with hypopituitarism, which means an over-active pituitary gland which can be caused by a pituitary adenoma.

I was diagnosed in April 1972 and my treatment began that June, when I was 20. By that time, I was 6ft 8in and I was still growing at a phenomenal rate at an age when most people have stopped.

My bone age was only 15, however, and they hadn’t fused. So I had delayed puberty.

The treatment consisted of a five-week course of radiotherapy to shrink the tumour in my pituitary gland.

The treatment worked and I stopped growing. I am one of the most successfully treated patients who have received that type of therapy.

Had I not received the treatment, I would have kept growing. The level of growth hormone I was producing was so huge that it was virtually off the scale.

Since then, I have lived a fairly normal life. I am married to a wonderful woman and I have two sons. Both are over 6ft, but they do not have the condition.

In middle age, I have developed cardiac problems and I suffer from atrial fibrillation, which causes me some distress when I walk. I also have arthritis.

My association with Charles Byrne happened coincidentally. A guy called Ronan McCluskey was making a documentary about Byrne and he sent me an e-mail in 2009.

Another man, Pat Grimes, had recommended that he talk to me and he described me as “brave and tall”, which is a Tyrone expression.

He felt I knew a lot about tall people whereas, in reality, I did not even know who Byrne was, even though he had been born just 20 miles from where I live. I gave the modern day perspective on being tall.

By coincidence Ronan was also talking to Marta Korbonits, who is professor of endocrinology and metabolism at St Bartholomew’s. She was a protégé of Prof Besser.

She was involved in a research project that had discovered that this disease was hereditary. They had identified the rogue gene responsible.

I was approached in September 2009 to give a DNA sample when I was attending as an outpatient in St Bartholomew’s Hospital. That’s how we established a genetic link to a common ancestor with Byrne going back between 46 and 57 generations. It makes your head spin.

I’ve been lucky in a way that Byrne never was: he died penniless at 21. I have learned through my condition that the most important dimension is the one between your ears. You learn the follies of people’s attitudes about different shapes and sizes.

I remember when I was being treated originally, there was a stockbroker who had the opposite dimensions to me. When the nurse arrived, she asked him if he was off school. He handled it brilliantly because he was confident in his own skin. That’s what really matters.

Brendan Holland is giving a talk on gigantism in the Killymaddy Tourist Information Centre in Dungannon at 7.30pm tonight

In conversation with Ronan McGreevy

Gigantism facts

Gigantism is abnormally large growth due to an excess of growth hormone during childhood usually caused by a pituitary adenoma or a benign tumour of the pituitary gland. Untreated, patients can grow up to 7ft tall.

If excess growth hormone occurs after normal bone growth has stopped, the condition is known as acromegaly which is much more common and can lead to many complications in later life.

Though people with acromegaly have stopped growing, they exhibit symptoms ranging from joint pain to heart disease and headaches.

Gigantism is usually treated with surgery which is successful in 80 per cent of cases. Alternatives to shrink or remove the tumour are medications and radiation therapy.