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UsherNet.org > What is Usher-Syndrome > Usher Study by Mary Guest > Reaction of Family and Friends
Retinitis Pigmentosa

Genetics

Problems

Reaction of Friends

What to do

Planning of Future

Summary

Reaction of Family and Friends

A diagnosis of Usher syndrome for the individual poses many problems and also for the family. The reaction of friends and relations can largely determine how the victim will handle the future and how well.

Parents who have faced the first hurdle of deafness with their child, who have spent the growing years struggling with language, lip reading, speech development and hearing aids and learning sign language, together with the emotional output involved will begin to feel that this great effort has been rewarded as the young adult starts out in life.

It is at this point, as the son or daughter becomes more outgoing, starts work, starts driving perhaps, or wants to get engaged that the awful truth is often discovered.

Reactions to the diagnosis of RP vary. Some parents are so shocked that they can hardly bring themselves to talk about it to each other. If the diagnosis is made when only one of the parents is present, he or she not only has to bear the initial shock, but also has the unenviable task of trying to convey the news to the spouse.

The consultant may not have had enough time to explain in terms that the parent con comprehend the nature of Usher syndrome, and the stricken parent leaves the consulting room with many half formed questions till unanswered.

It is often left to the parent to break the news to their child and many are at a loss as to how this should be done. They may not disclose the diagnosis immediately; some parents carry the burden of knowledge for months or even years only revealing the truth when their child is planning to marry or take a hazardous job.

Some families cannot accept the prognosis of possible blindness. The term 'blind' is an inadequate word because in lay terms it means someone who cannot see anything.

Unless the nature of RP as a visual handicap is explained these parents take comfort in the knowledge that their son or daughter can see to read and ignore the fact that he or she may only have 25% of his central vision still functioning. This attitude can lead them to react inappropriately to the practical and emotional needs of the affected child.

An understandable reaction to the diagnosis of Usher is for the family to search for treatments. They may have been told kindly or otherwise by the consultant that there is at the moment no known cure for RP, yet they have read newspaper reports about treatment around the world which claim to arrest the condition.

Sadly, many families spend the next vital years pursuing these claims, raising money and making big financial sacrifices in order to pay for travel and treatment yet the real need for rehabilitation, career guidance and help with daily living skills for the young person are neglected.

Although there is no known effective treatment for RP, the future is not entirely without hope. The last decade has seen research into the causes of RP increase rapidly, with several major centres in the USA and Canada undertaking specific studies into retinal degeneration. This interest has been reflected in Europe particularly where major RP research is being done in four centres in London, Birmingham, Glasgow and Edinburgh.

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