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Ears, Nose, Throat and Health

Limited Vision, blind

Night Blindness

By Dr. W. Gifford Jones

october 4, 1992

How would you react if you knew you were gradually going blind? This week the account of one man who faced this frightening problem. It's a story of despair and courage.

I recently interviewed Gordon Gund, co©founder of the Retinitis Pigmentosa Foundation, and owner of the San Hose Sharks hockey team who faced this personal tragedy.

Gund told me how he slowly but surely realized something was wrong. He gradually noticed a loss of side©vision in dimly lit places. One time he walked into a waitress and sent her tray flying. People thought he was drunk.

One another occasion he reached over to kiss a friend on the cheek and kissed a perfect stranger.

He had a hair©raising experience when he missed another car by inches. As the disease progressed he had to give up flying when he could only see 7 of the 14 planes waiting to land.

The diagnosis? Retinitis Pigmentosa (RP), a slow deterioration of the retina, the back part of the eye, which transmits images to the brain.

Gund was only 26 years of age when this disease struck. He had pinhole vision when his second son was born. Two weeks later he was totally blind.

Retinitis Pigmentosa affects one in 3,200 people in this country. Patients initially complain it's more difficult to see on a cloudy day or in a subway. It doesn't have to be pitch black to be night blind.

Dr. Maria Musarella, Director of the RP clinic at the Hospital for Sick Children, in Toronto, says, "The first clue in children is if they have trouble getting up at night to go to the bathroom. Mothers often say their child is terrified unless someone is there to guide them. Even if a light is left on it's not good enough."

Dr. Musarella stresses we should talk about visual impairment, rather than blindness, in discussing RP with patients. Luckily it's only a few people who go on to lose all sight. One of my patients has had RP for many years and still works daily at his computer.

Gund told me, "The prospect of diminished sight is a fearful thing. I couldn't accept the fact there was no treatment for this disease.I had gone through every possible emotion. I was desperate and scoured the country, then the world for help without avail.

Gund even visited Russia where they were using ultrasound and extracts of animal biostimulants as a treatment in Odessa. It was a disappointing trip.

Gund says he came to terms with his darkness in the Black Seaport of Odessa. And decided to try and be a success in business. Now he's one of the wealthiest men in the U.S.

A thousand and one treatments have been tried to stop the progression of RP. Huge doses of vitamins B, C and E have proved useless. Other attempts using bee stings and human placental transplants have also proved futile.

I regret I can't report a cure for this condition. But the Retinitis Pigmentosa Foundation in this country says the public needs to be warned about the treatment for RP offered in Cuba.

Patients with RP have travelled from all over the world to Cuba to have their condition treated. Even tours have been organized to take RP patients to this country.

Reports from Cuba claim that the progression of RP can be stopped in every case. And reversed in three out of four operations.

Dr. Musarella claims there have been no control studies done. That the basis for treatment is fallacious and can be dangerous. Moreover Cuban authorities have refused to allow outside ophthalmologists to visit Cuba for an evaluation of the treatment.

Gund, like many others with visual impairment, continues to lead a productive life. He skis with a sighted partner that follows a few feet behind. They communicate via radio headsets. Obviously there are frustrations.

Gund related, "It's frustrating not to see the San Hose Sharks play. If I could see for 24 hours I'd spend it with my wife and children at a hockey game. The one thing I wouldn't do is sleep".

Gund has donated large amounts of money to the RP Foundation. His one hope is that others will eventually be cured of this disease. In the meantime patients with RP should beware of false claims of cure from Cuba.

Gund keeps his sense of humour. As I left Gund I asked for one favour. Would he tell his hockey team to go easy on the Toronto Maple Leafs. He replied, Not a chance!"


W. Gifford-Jones M.D is the pen name of Dr. Ken Walker graduate of Harvard. Dr. Walker's website is: Docgiff.com

My book, �90 + How I Got There� can be obtained by sending $19.95 to:

Giff Holdings, 525 Balliol St, Unit # 6,Toronto, Ontario, M4S 1E1

Pre-2008 articles by Gifford Jones
Canada Free Press, CFP Editor Judi McLeod