Debbie's fight for sight
Debbie's story living with Usher syndrome II
Siblings Debbie and Adrian White were diagnosed with a rare genetic disorder, called Usher syndrome II. The condition causes hearing impairment and progressive vision loss due to retinitis pigmentosa.
At the age of five it was suggested that Debbie went for a hearing test and when her younger brother, Adrian, was born he was automatically tested. In his case he was born partially deaf. It was when they hit their teens Adrian visited an opticians, aged 17, he was referred to a consultant at Birmingham Genetic Clinic and was diagnosed with retinitis pigmentosa.
Adrian said: “I can still remember the day I was told that I had this eye disease and I thought what am I going to do? Not only do I have problems with my ears - I’ve now got problems with my eyes.”
At the same time, Debbie, aged 21, was also diagnosed with the condition. Debbie said: “As a big sister you always feel protective over a younger sibling – Adrian’s condition has always been worse than mine. I would willingly swap places with him, as he has always been a very independent person and it would mean the world to us if Fight for Sight could find a cure.”
The condition causes tunnel vision and night blindness and before Debbie’s sight become progressively worse, she was a keen golfer. Debbie said: “When you start losing your sight, you start losing your independence, especially as I can’t drive and I can’t really go out at night on my own without assistance. Giving up playing golf was incredibly difficult too.” For the past two decades Debbie has been a supporter of Fight for Sight and now chairs the Fight for Sight’s Warwickshire Committee. She decided to share her passion of golf and organises an annual golf day to help raise vital funds for Fight for Sight and eye research.
Debbie has cataracts forming as a result of RP and also has astigmatism of the eye.
“It’s incredible people just disregard my disability because it appears that I look normal. I want to raise awareness so more people understand the condition. I want to raise awareness so more people understand my condition. Fight for Sight is an incredible charity funding research and that’s why it’s so important to raise the money to help support eye research.”
What is it?
Retinitis pigmentosa (RP) is the name given to a group of inherited disorders that affect the light-sensitive part of the eye (the retina). It is the most common inherited eye condition, affecting 1 in 4000 people.Find out more