When paramedic Huw Simmonds took part in a Santa fun run along Eastbourne seafront last year for the Myasthenia Gravis Association, little did he know that within six months he would be diagnosed with the rare disease.
The 52-year-old father of four was struck down with the auto-immune disease in June when he started struggling to keep his eyes open in June.
He went to see an optician who told him to see his doctor, who immediately recognised the symptoms of the little-known-about disease and he was referred to a neurologist.
He was put on medication and is due to return to work this week.
He says it is ironic that this last time last year he was getting ready for the MGA run, when hundreds of people dress up as Santas for the annual run along the promenade, and this year as a diagnosed sufferer, is in training to take part again.
The 2013 Santa Fun Run and Walk is on Sunday December 1 at 1.30pm.
Runners and walkers of all abilities will set off for the five kilometre run or walk from the Sovereign centre to Holywell Tea Chalet.
At his home in Okehurst Road, this week Steve said the last few months had been a difficult time.
“It got to a point where I just couldn’t keep my eyes open,” he said. “Some nights if I was watching television or in company I would quite literally have to prise my eyes open and hold them open. I had double vision and everything was spinning. It was frightening because I didn’t know what was happening. At first I put it down to a house move and work but then when it didn’t go away I went to see the optician who told me to go to my doctor straight away. I was referred to the neurologist and diagnosed quickly and put on medication which appears to be working.
“It’s funny when you think that at last year’s fun run I was doing it because I wanted to run along the seafront. I am going to be running it again this year but with an added interest.”
Huw, his wife Sarah and family have been supported by the MGA and Steve Saunders is the local representative, who also organises the fun run.
He said, “Little is still known about Myasthenia Gravis but the body’s immune system, in the form of antibodies, attacks and damages the nerve signal reception areas causing a breakdown in communication between nerve and muscle, which results in a loss of effectiveness of the muscle.
“There is no explanation for it. It just comes on suddenly. Recent research has resulted in more understanding and better management of the disease but there is still no cure. The MGA raises money for research, find a cure, increase public and medical awareness and support families.”
There is still time to enter the 2013 Santa Fun Run and Walk. The cost is £10, or £5 for a child, which includes a Santa suit and a hot drink and mince pie. Visit www.sovereignfm.com or call 01273 581087.