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Living with Retinitis Pigmentosa: Helen speaks of her frustrations with her diagnosis

Helen Colson sat at a table at Galloway's in Southport, Behind Helen is some support leaflets and aids to support people with sight loss
Helen Colson

A young woman who was born with an eye condition she never knew she had until recently, now faces further frustrations as she waits to hear if she has an added genetic disorder.

After noticing dots in front of her eyes in 2017 and undergoing a series of tests, Helen Colson, from Southport, was finally diagnosed with Retinitis Pigmentosa (RP) at the end of 2018.

But she admits she is still in limbo, as she is now waiting for genetic testing to discover if she has Usher Syndrome, which is a combination of deafness and vision loss, or another genetic disorder.

Admitting she would ‘rather die than become blind,’ Helen sunk into a period of depression and anxiety and became bitter about the things she felt she could not do.

But shortly after moving from Solihull to Southport with her mum and sister in July 2018, Helen sought support from Galloway’s, based in Wright Street.

Here, she describes her journey: “I was seeing dots in front of my eyes and I knew something wasn’t right as I was getting clumsy. I could still see, but the dots were always in front of what I was looking at. I went to my opticians in Solihull where I lived at the time and I had a visual fields test where I had to press a button if I saw a flash. As I couldn’t see it, I had to come back another day.”

Helen was eventually referred to Heartlands Hospital in Birmingham, where she was told she had scarring at the back of her eyes and to come back after six months.

She added: “I asked about the dots and the consultant said because of my age it was jelly breaking up at the back of my eyes, but I could not accept that.”

After more tests, she was referred to Birmingham Midland Eye Centre at City Hospital for electrodiagnostic testing to measure the function of the patient's retina and optic nerve.

By this time, Helen had moved to Southport, with Helen adding: “I asked to be transferred to Liverpool as I had moved but I was told the consultants there would have to start the process again, so I had to stay until I was diagnosed.”

Helen Colson stood up with her guide dog Kelly. Kelly is wearing a fluorescent yellow vest. Behind them is a mosaic created by the art group
Helen Colson with her guide dog Kelly

But following a suggestion she may have Usher Syndrome, at the end of 2018, she was eventually referred to Manchester Eye Hospital.

Helen added: “I felt I had the rug pulled under me because I had spent 18 months trying to get diagnosed, then six months thinking I had RP and Usher Syndrome and now I may not actually have Usher Syndrome, so I have to wait for the genetic diagnosis to come back.

“To me, I can still see everything but tests say I can’t and I have been registered as severely sight impaired. I can tell my peripheral vision is going and I get blind spots in my central vision. If I drop anything on the floor I have no chance of finding it.”

Helen had to give up her job as a teaching assistant and she admitted she had a break down.

She said: “Following my diagnosis, I had depression and anxiety and I had a breakdown for six months. I felt I would rather die than become blind because I had already had problems with my lazy left eye, with a squint and an under developed eye socket so I have never had good spatial awareness.

“All my life people have told me I can’t do something but I have always made myself do it.

“After I was advised to go on long-term sickness, it made me feel really bad about what I could not do anymore and my mental health deteriorated.”

This is what a person with RP may see, known as tunnel vision. The photo shows two young boys surrounded by a black fog
This is what a person with RP may see, known as tunnel vision

But in the autumn of 2018, following advice from a family friend, Helen spoke to an Eye Clinic Liaison Officer over the phone who

referred her to sight loss counselling with the RNIB, which she had to wait eight months for.”

It was only whilst visiting Citizen’s Advice Bureau next door to Galloway’s in Wright Street that Helen decided to see what support was available there.

She attended the charity’s Living with Sight Loss Course and admitted she made a friend for life, who is of a similar age and also has RP.

Helen is now a regular at the Galloway’s Get Active sessions, where she goes out walking and does indoor rock climbing.

She added: “The Sight Loss Advisors, Jenny White and Carl Moore, are really important as they have shown me there are lots of things I can do. “The Get Active programme has been an important part of me getting better and improving my mental health. When you are struggling with your mental health it can be hard to make the first step. But you have to get outside, even if it is at the end of your drive and each day you can build on that.”

Helen’s confidence has also been boosted by the introduction of her guide dog Kelly, who has been by her side for the past four months.

And outside of Galloway’s, Helen keeps busy by volunteering at the Rainbow unit in Birkdale.

Galloway’s, which also has sites in Penwortham, Chorley and Morecambe, supports more than 7,000 blind and partially sighted people across Sefton and Lancashire.

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