By Tom Rye
Below is an extract I have been asked to write for the book Dizzy Me by Tania Stradsbader & Floris Wuyts.
The book is currently being translated from Belgian into English. It will contain stories from around the world about vestibular disorders. Along with details on the science behind these disorders. Many people like Beth have had their life put on hold due to extremely rare vestibular conditions and this will help give them a voice.
A rare trip into the garden for Beth, May 2015
My sister Beth Rye has been suffering from an extremely rare inner ear condition called SSCD since June 2013. After 18 months trying to get a diagnosis, 14 weeks in hospital and two failed operations we were left with very few options in the UK. Since July 2014 Beth has been completely house bound and has spent days confined to her bed. Sounds are a huge problem for her as they increase her dizziness and can even make her eyes bounce. She hears her heart beating 24/7. As well as SCD she also has vestibular damage which means she is constantly dizzy and unable to leave the house. The dizziness also makes her vomit on a regular basis. This got so bad at one point she was admitted to hospital and kept on a drip for a nine weeks. In this time she also suffered from sepsis – a life threatening blood infection. It was extremely lucky the symptoms of this were spotted early.
Getting a diagnosis was extremely difficult, many doctors did not even understand what was wrong with her. As Beth’s symptoms are so severe we decided that the best chance for her to get any of her quality of life back would be to get treatment in the USA. Similar to other medical areas, the states leads the way on treatment for SSCD. The condition was first observed by Dr Lloyd B Minor, Baltimore 1998. Now numerous clinics offer treatment for the condition and are taking an increasing number of international patients.
Diagram showing SSCD on the superior canal. Source: Vestibular Disorders Association
Superior Semicircular Canal Dehiscence or SSCD is a rare condition affecting the bone that covers the superior canal in the inner ear. Symptoms arise from a dehiscence or thinning in this bone that sits on top of the superior semicircular canal. In SCD, fluid can be displaced by sound and pressure stimuli. Normally there are two holes or ‘mobile windows’ in the inner ear but in with SSCD a ‘third mobile window’ is created. The signs and symptoms of SSCD are created by this third hole or ‘window’. SSCD can trigger a range of both balance and auditory symptoms. This includes vertigo triggered by loud noises, coughing, sneezing or straining, disequilibrium, oscillopsia (‘bouncy eyes’), distortion of hearing external noises, enhanced hearing of noises transmitted through bone (pulse, footsteps, even eye movements). The effects SSCD can have on a person are huge and extremely debilitating.
Treatment in the UK can work for some, however Beth’s form of SSCD has proven extremely difficult to treat with UK techniques. It wasn’t an easy decision but we all felt if we had one chance left we wanted to give Beth the best chance possible for a full recovery. After making the decision to send Beth to the States we had to try and raise as much as possible to contribute to huge cost of treatment.
We already had a website and a blog set up that Beth put regular entries into. We used this as our initial platform to build our campaign. Before we started crowdfunding we sold wristbands through the website. These have the gettingbethbetter logo and website on. This was a great way for friends to show support for Beth and also for us to budget in for marketing once the crowd funding started. To date we have sold over 500. It has been amazing to see so many people we know supporting Beth on their wrist.
Just a few of the many hundreds of wristbands that kick started out campaign
At the start of May 2015 the fundraising officially began with the release of a campaign video and the launch of a You Caring site (free crowdfunding platform). The video received 13,000 views in just a few days and in just over a week we had raised over £5000. Most of our updates came through the gettingbethbetter Facebook page which is constantly growing, up to 1500 likes now.
Media began taking an interest as soon as the gettingbethbetter page became more popular. This was helped by the constant sharing of our video. We have now featured in local newspapers and a national online paper The Huffington Post, both of these were a huge boost to our fundraising. The biggest source of fundraising was through events in our local area. This started with an 80 mile cycle with 16 others. This was two weeks after our initial launch and we were well on our way to £10,000.
Team Gettingbethbetter after the 80 mile coastal cycle
Following the cycle there was an event, almost everyday, to support Beth. Many friends ran cake sales at their workplaces under the name “Baking Beth Better’. Local schools, hairdressers, coffee shops all got behind the cause and ran their own mini events to raise funds for Beth. Our neighbors ran an open garden a week after the cycle. This made over £2000 and saw over 100 people come throughout the day to show support for her. I also ran a virtual horse racing night at a local pub raising over £1000.
Two of our youngest supporters and some lovely looking cakes
I have touched on a few of our events – there have been plenty more and even more to come as we look forward to Beth’s follow up treatment. Following a garden party on the 4th of July we had raised over £40,000 from all of our events and online campaign. This is a huge amount to have raised in such a short space of time and I hope we can keep the momentum to raise even more.
The money has meant Beth has been able to travel to Boston to be treated for her condition. She has already had the surgery and we hope this will be the beginning of the end for her. We will need to continue to crowd fund for her follow up treatment, anything we raise that exceeds this will go towards raising further awareness for SSCD.
Beth’s story has now been picked up by a major TV channel who want to do a feature documentary about her story. They have already filmed her in the UK and are currently filming her while she is being treated in Boston. Beth is very keen to increase awareness for SSCD. No one should go through what she has, I cannot comprehend what it has been like for her. I am inspired by her constant resilience even when the odds are stacked against her. We hope that with our ongoing campaign less sufferers will struggle getting their condition recognized for so long.
Beth & Me x