Woman born deaf and now losing sight in her twenties says ‘I don’t want to regret not appreciating what I have now’

A young woman who was born deaf and is now gradually losing her sight has said it has been “very difficult” to accept her diagnosis, to the extent she developed “suicidal ideations”, but she now wants to raise awareness about her rare condition through social media.

Elle Jones, 27, a respiratory physiologist who lives in Southsea, Portsmouth, with her fiance, Ellise Simpson, 27, began struggling to see when walking at night while studying at Leeds Beckett University in 2015.

Elle’s peripheral vision deteriorated over time, and in 2022, she was diagnosed with retinitis pigmentosa, which according to the National Eye Institute, is a rare disease that makes cells in the retina break down slowly over time, causing vision loss.

She then had to accept that she will gradually lose her sight – she does not know how much of her sight she will lose –  which was “hard” to process at first.

Elle developed “suicidal ideations”, the act of imagining one’s suicide, and was “having very disordered eating”, but after therapy she has built up coping techniques.

Elle’s loved ones have been very supportive throughout her diagnosis, and she has also received support from Sense, a charity for people who are deafblind or have complex disabilities, and even ran the 2024 TCS London Marathon in aid of them.

She now wants to try to raise awareness about her condition on TikTok as she struggled to find content creators when she was first diagnosed.

Elle told PA Real Life: “It’s just a case of trying to avoid being in a negative mindset now, when I still have kind of functioning eyesight, because I could be potentially missing out on things, just out of fear or anxiety of a situation.

“I don’t want to live to regret not appreciating what I have now.

“I think there’s a bit of a misconception around blindness though … only a small amount of people who are blind can see nothing, it’s a scale.

“It’s not definite that I’ll be totally blind, its mainly the extent of peripheral vision I lose – I could still have central vision.”

Elle was born deaf, and up until her grandfather lost his hearing in old age, she was the only one in her family to be non-hearing.

However, she said she was “never treated differently”, and has never let her deafness “act as a barrier”.

While studying sports and exercise at Leeds Beckett University, in 2015, Elle began experiencing night blindness.

She said: “I’d be walking from our house to campus and when it was dark, I would just struggle a lot more in areas which weren’t as well lit, compared to my friends.

“And then it wasn’t until I think I just had a routine eye test when I was home one summer, and I just kept on failing the peripheral build test.”

Elle’s peripheral vision deteriorated over time, and in late 2022 she was diagnosed with retinitis pigmentosa.

There is no cure and no way of slowing the sight loss, and Elle has since had to come to terms with the fact her vision will gradually decrease.

Doctors also believe she may have usher syndrome, a rare disease that causes retinitis pigmentosa and deafness, and she is awaiting genetic testing to confirm this. At the moment, Elle can see just 10 degrees to her left and right.

“A part of me was expecting it (retinitis pigmentosa diagnosis) because over the years, I knew (my eyesight) was getting worse,” she said.

“I think I just repressed it and was trying to ignore it … in terms of accepting it, it then became quite hard.”

This had a huge impact on her mental health, especially as she will be getting married at the end of June 2024, and is unsure whether her current job will be accessible in the future.

She added: “I’m worried about the sense of independence and the uncertainty of navigating daily things that we do, that’s not even taking into account social events or anything like that.

“My mood was impacted – I had suicidal ideations and it impacted my eating habits, I was having very disordered eating.”

Elle has also always been sporty, and has played tchoukball all around the world competitively, but she knew this would have to stop too.

Since her diagnosis she has had therapy, which has helped with preparing for the future.

“I’ve done some therapy for acceptance and I have mechanisms to address changes which are due to happen,” Elle explained.

“I’m just kind of in that mindset where I know that there’s going to be some days which are going to be worse than others.

“I think I will have to practise those coping tools when the time comes.”

Throughout Elle’s diagnosis her loved ones have been very supportive – she said: “The diagnosis didn’t make any difference in the way (my fiance and I) were together and if there’s any changes that we need to make, we’ll address it when it comes to it.

“My family’s main concerns were about how I was and how I was coping with it … rather than the actual condition changes itself.”

Elle has also received support from Sense, a charity for people who are deafblind or have complex disabilities, having several phone calls with them about the services they offer, and advice on accepting her diagnosis.

In April 2024, Elle ran the TCS London Marathon in aid of Sense.

Elle said: “It felt quite good to be able to kind of work towards something and to have a new goal, a new challenge, and it would be something that would be accessible for me moving forwards as well.”

Around the same time, she began posting her journey on TikTok, under the handle @pieceofelle, and hopes to spread awareness about deafblindness in the future.

“When I initially got diagnosed, I was looking online for other people with a similar condition but there weren’t many people … so I want to be that person and post more about that,” she explained.

“I’ve had messages from people saying they are in a similar position and they ask me for advice too so it’s been quite positive on that front.”

Elle thinks her experiences have changed her outlook on life – she said: “You practise gratitude more when you know you’ve got something now, which you might not have later.

“I think everyone thinks they are invincible, especially when you are young, but I think it makes you put that into perspective and appreciate things in a different way.”

For more information, visit: www.sense.org.uk.

For support, visit: www.samaritans.org and www.beateatingdisorders.org.uk.