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UsherNet.org > What is Usher-Syndrome > Usher Study by Mary Guest > What are the Problems
Retinitis Pigmentosa

Genetics

Problems

Reaction of Friends

What to do

Planning of Future

Summary

What are the Problems

By the age of 20 most deaf people will be in training or already employed. Those who have RP may well be doing work which will eventually prove difficult or even dangerous to carry out.

The rate at which vision will degenerate over the third decade of life is difficult to predict, there is therefore a question about when to change course. Should the keen young motor mechanic and student nurse carry on, and have perhaps 10 to 15 satisfying years of work, or should they change to something that they can work at even when their vision has become severely restricted.

"Most deaf people have a negative attitude towards blindness. For very understandable reasons deaf people universally feel the worst possible handicap that can befall a human being is blindness. Ironically, blind people feel the same way about deafness.".

Vernon's apt words embody the dilemma which affects those who are both deaf and blind. As the deaf person contemplates the future with RP he or she is already leaving the world of the deaf and entering the world of the blind, yet neither world wants to know him. Contrary to popular opinion, people with one disability are not predisposed to being sympathetic and understanding towards those with a different condition from their own.

Deaf people are largely dependent on sight to aid communication, as the visual field narrows it becomes more difficult for the affected person to follow signs and lip read more than one person. Young adulthood is the time to be out and about pursing sports and leisure activities and socialising with friends. The young deaf person who also has RP will find that night blindness places severed limitations on their social life, on opportunities for meeting people and on developing friendships.

A deaf friend who, for some inexplicable reason, walks into lamp posts, trips over curb stones and needs to hang on to an arm is an embarrassment and liability to his friends. Thus, even before the diagnosis of RP is confirmed this young deaf person has begun to withdraw from social life an the pattern of isolation is being established.

Regrettably, in some cases RP is not diagnosed until a serious incident such as a road traffic accident suggests that the patient's vision should be examined more thoroughly. The victim not only has to face recovery from an accident but also the knowledge that he has an untreatable eye condition.

All these factors, social isolation, uncertainty about employment, the emotional reaction of parents and facing an unknown future make it hard for this young person to adjust. The youngster often faces these difficulties with little constructive help from the army of professionals who may be consulted, and they are fortunate if they find anyone who truly understands the condition of Usher syndrome, who can offer the constructive counselling that will be needed over the ensuing months and years.

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