12/06/2015 14:45 BST | Updated 12/06/2015 17:59 BST

Woman Left Bedbound By Tiny Hole In Ear Reveals How It's 'Impossible' To Lead An Ordinary Life

Beth Rye, 24, had always dreamed of becoming a nurse.

But her world was turned upside down after being diagnosed with a rare health condition that left her bedbound and unable to lead a normal life.

In a cruel twist of fate, the nurse is now the patient.

"I feel like I'm constantly on a boat," she tells HuffPost UK Lifestyle. "I can't walk in a straight line because my balance is so bad. Sounds are like torture as they make my head spin even more - car horns literally make my eyes bounce.

"I've also lost a lot of my independence and rely on my parents to help me with daily living."

beth sscd

In 2013, Rye was diagnosed with Superior Semicircular Canal Dehiscence (SSCD), an extremely rare condition which means she has a pin-sized hole in the temporal bone which sits in her inner ear.

This tiny hole creates a third "mobile window" into the inner ear, which causes sound or pressure to trigger abnormal activation of the balance canals in the ear.

According to the Vestibular Disorders Association there are usually only two "windows" in the inner ear: the oval window, through which sound energy is transmitted into the inner ear, and the round window, through which sound energy is dispersed from the inner ear after traveling around the cochlea.

With SSCD, a third window is created and, as a result, Rye experiences symptoms such as dizziness, nausea and vomiting, vertigo and tinnitus.

"The hole in this bone is tiny, but the side effects can be devastating," reveals her brother, Tom, who has been instrumental in raising awareness of Rye's condition.

He recently launched a campaign called 'Get Beth Better', to help raise money to fund treatment for his sister in the US.

beth and her brother

Beth and her brother Tom before her diagnosis

Since she was diagnosed with SSCD in 2013, Rye's life has altered dramatically - to the point where she is now a prisoner in her own bedroom.

The nursing graduate once had to spend 14 weeks hooked up to a hospital drip in order to survive, because her dizziness made her so sick that she was unable to keep food down.

To put her condition into perspective, one of Rye's university friends - who is now a qualified nurse working in London - tells HuffPost UK Lifestyle that the condition is "arguably worse than cancer, because it's so debilitating".

"People with cancer can have days where they're well enough to leave the house and do things, and if they're unwell they can watch films or chat on the phone," she says. "But that isn't the case for Beth."

"Nowadays everyone is in some way affected by cancer, which increases the support family and friends can provide," she adds. "But because Beth can't tolerate noise, she's even more isolated. She can't sit and chat because even the noise of typing on a computer hurts her."


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Rye first noticed something was wrong during her nursing placement at university, when she would become increasingly dizzy and need to lie down several times a day.

Confused by what was happening, she drove back to her parents house in Somerset and collapsed as she walked through the front door.

"I had severe nausea and vomiting, vertigo attacks, pulsatile tinnitus and ‘bouncy’ eyes. So my symptoms came on within 24 hours," reveals Rye.

As if this wasn't bad enough, her suffering would worsen with sound or movement.

Following her visit to the doctors, Rye was left disheartened after being prescribed nasal spray: "It took me 10 months to get a diagnosis. The doctors in my local town just kept discharging me, telling me I would get better and that I just needed to try and get on with my life.

"This was one of the hardest times because I felt like I wasn’t being taken seriously."

Needless to say, Rye didn't recover. In fact, the "life-changing" condition has meant that Rye has had to put her nursing career on hold - despite managing to graduate last July.


The past 11 months of her life have been spent bedbound, with occasional hospital trips breaking up the long, monotonous periods of time confined to her home.

"It’s isolating and can be hard to deal with at times," she admits. "It’s impossible to live a normal life."

Because her condition is so rare - in fact, the first medical research surrounding it was presented in 1998 - Rye has been forced to conduct a lot of research herself, with the help of her family.

After seeing a private consultant in Cambridge, Rye underwent two failed operations to try and correct her ear.

Now, her only hope for treatment is to visit a specialist in the US, but it's a trip which will cost her family more than £50,000.


"After discussing my case with a surgeon in Boston, I discovered that the SSCD is in a tricky place, which is even more rare," explains Rye.

"For people in this situation there's a different surgical technique that can be used, increasing the chances of the repair working," she adds.

"The downfall is that they don't do this in the UK because there's simply not enough experience of the condition over here. Also, because they treat hundreds more patients, the success rate is based on a higher number of people."

To raise the money needed to get their daughter better, Rye's family have rallied around to organise fundraising efforts for her including an open garden event, a horse racing night and a 5km run. And she's even been supported by complete strangers.

"Words cannot describe how amazing it is to see people fundraising or donating to help me. I've even had donations from people I don’t know.

"I quite often get sent pictures of peoples supporting the campaign which really makes my day. I didn’t ever expect this kind of response and I think it is fair to say this world is full of such generous, loving people!"

beth rye

The next step for Rye is to visit the US in a month's time to have more tests, scans and consultations with two leading SSCD surgeons, who will then review her results and find a solution for fixing her ear.

But, of course, this all depends on her financial situation.

"I am lucky to live with the most supportive parents and brother," she adds.

"This illness has made me stronger as a person and I am much more grateful for the little things in life.

"I know I still have a long way to go, but I'm proud of how far I've come and can’t wait to be living a normal life again."

Visit Beth's 'You Caring' page to donate to help her reach her target.

21 Rare Diseases