Anthony’s Hearing Loss Story

Since I’m blind, the sound I can’t take for granted any more, literally means the world to me. It is the key to my independence, to the travels and adventures I’m having and to the communication that keeps me connected and grounded in this world.

Anthony first contacted me after listening to Hearing Me, an audio documentary, which gives a glimpse into my world, following my experience of sudden hearing loss.

He wrote to tell me that he was ‘deeply affected’ by the way my story had been brought to life. He told me that he also has hearing loss, though he remarked, ‘For me, it means more than just that.’

I was intrigued to find out more about Anthony, and he allowed me the opportunity to interview him via Skype when he told me his story.

 

Hi Anthony, can you tell me a little about yourself?

Hi, my name is Anthony Reyers, I’m 27 years old, I was born and raised in Belgium where I am still right now. I’m an only child and my parents still happily live together. Thank god for them because they are always there to support me, which I am very very very happy for.

I was born blind because of this thing called Norrie Disease. It’s a very rare genetic disease… and actually, I didn’t know I was going to have any problem with my hearing until I was 18.

I’m interested in everything audio and music. When it comes to audio, it all really started with a radio receiver that I got from Santa Claus when I was about 7 years old. I started browsing the radio stations and I found really interesting things there because at this time in Belgium there were quite a few radio stations that were broadcasting not-so-mainstream music, and that’s really how I found out about the electronic dance scene.

Later on, I got really really happy to find my partner in crime, Xander, from the Netherlands… Now we’re also producing together which means that we create our own tracks, our own songs. And yeah, somehow it seems that the career as a DJ producer starts to get some attention because I’ve just received a booking request for a major festival in our scene this summer in the Netherlands. For me, this is seriously a dream coming true… It’s one of the most incredible things that you do because then you have a feeling that the stuff you’ve been making has some meaning to some people.

And, aside from that, I’m spending lots and lots of time for an organisation called ICC Belgium which is an organisation that I co-founded. It’s an organisation that tries to increase the independence for blind and visually impaired people, giving them a community that they can rely on.  It’s an international summer camp… We organise training, all about technology and social skills for blind and visually impaired people. I really love helping other blind people out and teaching them what I know… I think that, as a blind person, our organisation can show that there is a way to be a good, confident, independent human being in society… and that your only limit is your own imagination.

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Because of [ICC Belgium], I’ve become an avid traveller. I’ve begun to travel to new places, in my own way. For example, I went to India not so long ago, and I didn’t go there to be the tourist and look at the Taj Mahal. Actually, I went there to visit lots of social projects. I talk to people working with blind people, but also with people who are doing stuff with gay rights, with mental disabilities, with the #MeToo movement there within the movie industry, and also with ecological farming, and so on and so forth… What makes travel really great for me is when I kind of embed with the people that are local, in the sense that I stay with them, I live with them, I live their lives. Usually, I miss out on lots of sightseeing opportunities, but that’s OK because, for me, travelling is all about interacting with the people around me and feeling their stories.

Definitely. You get the true experience of someone who lives there… Let’s get onto the next question.

I gave you quite an extended answer on this one!

It was fantastic! OK, tell me about Norrie Disease. What’s your experience of it?

Norrie Disease is a recessive x-linked genetic disease, very rare. I think we’re about 500 people in the world. That’s our estimate right now – it might be a little more. But, it’s difficult to know since it’s still under-diagnosed as well. Usually, it results in blindness from birth.

My parents were told that since I was actually born with normal hearing, that this would, most probably, just be what I would have. Now, that was a gross misinformation, because what actually happens is that the hearing loss is progressive and happens over time. Usually, it starts to be measurable around the age of 12 or 13, which happened with me. Back then, I thought I was losing hearing because of loud music that I was listening to in my earphones, or that’s what people told me.

But then, later on, I still remember, it was February 2010, I was almost 18. I was sitting in my room, and suddenly it felt like somebody pushed something really heavy against my ear, you know, and suddenly the sound was gone in one of my ears. And, a few minutes later came a very loud loud screeching tinnitus. I think this sounds familiar because it sounds pretty much like sudden sensorineural hearing loss.

Yes, that sounds like my story.

And this was the first major Norrie attack that I had.

I went to look up Norrie on Wikipedia and then I saw that two-thirds of people actually start losing their hearing at some point in their lives with Norrie, which [I now know] is wrong – everyone does!

I didn’t look up my disease for 18 years, because I wasn’t interested. I didn’t really care about the name of my disease. I mean, I was like, OK, apparently I have a genetic disease and I’m blind. OK, fine. But then I realised, suddenly, that there was a lot more to the disease than I knew.

How does Norrie Disease affect your life?

In the beginning, of course, my blindness affected me in many ways. I suppose it has something to do with the social exclusion that I had to go through during secondary school, which wasn’t very nice.

But mostly, when it comes to hearing loss, you suddenly realise that you can’t take your sound for granted, and you start to live everything 3 or 4 times as intense because you think, OK, is this the last time that I will experience what I am experiencing right now? So, it means that every euphoric moment is really really euphoric. But it also means that if something [bad] is going on, or someone is leaving you, or some opportunity that you wanted to have and you miss it for some reason, that this hits very hard as well. Because you’re thinking, Maybe I won’t have any other chance at this anymore.

Can you tell me about the level of understanding of Norrie Disease and the focus of current research?

There is a really hard need for research. The research that we are applying for now is going in a more radical direction, which is the direction of gene therapy.

We will have a theoretical model on how to basically apply the gene therapy, and then in the next stage, we will have tests on cells etc. to see if this thing works.

Also, we need to apply for research that’s on finding lifestyle variables that influence the hearing loss, or other factors that can influence this in a positive way, or if there are already drugs that are existing that can do some damage control.

You mentioned, in your email, that you are currently running a campaign to help raise funds for research into gene therapy…

Yes, in the UK, we have an organisation, The Norrie Disease Foundation (NDF), which is an organisation founded by families who have children affected by Norrie. They have some ambassadors, which I am one. And, basically, in the UK they’re doing massive efforts to raise awareness about Norrie and about this research.

There is an urgent need for funding to make research possible. The money raised from my campaign goes directly to the NDF.

We’re working together with SPARKS, which is a charity that’s founded by the Great Ormond Street Hospital (GOSH).  and what they do is they multiply our fundraising money by 4 and then this is the budget that is put into the research. So with that money, they are funding the research of Norrie.


In his email, Anthony expressed the cruel reality of losing his hearing and the impact it will have on his life:

Since I’m blind, the sound I can’t take for granted any more, literally means the world to me. It is the key to my independence, to the travels and adventures I’m having and to the communication that keeps me connected and grounded in this world.

Voices are what I think of when I imagine my loved ones and they’re such an essential part of me that I simply can’t imagine living without them. As a DJ, producer and musician, music is my heartbeat, my passion, and what I live for every day.

If you would like to make a donation to help fund future research into Norrie Disease, please visit Anthony’s Crowdfunding page here.

And, to see Anthony presenting one of his tracks to Dutch DJ, Armin Van Buuren, on his radio show, click here.

It was an absolute pleasure to speak with Anthony. His passion for life and all things audio were a strong theme throughout our conversation, And, after saying goodbye, I felt elevated by his contagious positive energy. Thank you, Anthony, for sharing your story.

 

This article was recently published by Hearing Link.

Please Sign the Petition for More Tinnitus Research!

Give People With Tinnitus the Hope for a Cure!

This week is Tinnitus Week.

One in eight people in the UK has tinnitus and for some, the condition can be completely life-changing. Studies have found that people with tinnitus score significantly higher on the depression and anxiety scale and lower on self-esteem and well-being.

Here I am, talking about the effects tinnitus has on my life:

 

The British Tinnitus Association are focussing heavily on the importance of moving forward with tinnitus research to ultimately find a cure. They have launched a petition pushing for the government to commit more funding to tinnitus research. 

To show your support, please sign the petition for more research into finding a cure!

It’s so important to so many people: http://chng.it/HSMDM8Gv

You can also help reach more people by sharing this post and encouraging others to sign up too. Let’s make a real difference this #TinnitusWeek!

Thank you!

 

Working Together to Find a Cure for Tinnitus

British Tinnitus Association Manifesto Roundtables 2020, kindly hosted by Sir John Hayes MP. 

A discussion by Carly Sygrove, creator of the My Hearing Loss Story blog, and advocate for people with hearing loss and tinnitus. 

Tinnitus affects one in eight people in the UK, yet there is currently no cure.

My own tinnitus story began three and a half years ago when I experienced sudden hearing loss in my left ear. The moment I lost my hearing, I simultaneously gained the unwelcome whooshing and ringing sounds of tinnitus.

Following my hearing loss, I started to write a blog in order to share my experience of living without full sound and with other associated issues, including tinnitus. Through my blog, I have connected with people from all over the world whose lives have been affected by hearing loss and related symptoms. Tinnitus is one of the most common reasons why people contact me to seek support. Living with such an intrusive, yet invisible condition can be extremely difficult, and for some it is debilitating.

Although there are management techniques and devices that can mask the noises of tinnitus, there is nothing that can actually eliminate it. Knowing you have a condition for which there is no cure can be a tremendous mental weight to bear.

Tinnitus Research: How Can We Move Forward to Find a Cure for Tinnitus?

As part of the preparations for Tinnitus Week (3rd-9th February 2020), I was invited by the British Tinnitus Association (BTA) to attend a roundtable event at the House of Commons.

I would be representing people with tinnitus and joining researchers, other people with tinnitus, politicians, public health institutions and research funders, to discuss how we can progress the search for a tinnitus cure.

The Roundtable Event – House of Commons, Thursday 16th January 2020

Tinnitus roundtable

The event consisted of guests at two parallel tables, discussing how to move forward with tinnitus research.

Bringing together participants from a wide spectrum of backgrounds and specialisms encouraged an active and productive discussion. There was a focus on both the technical aspects of developing a cure and the personal opinions of those who are living with the condition.

The Technical Aspects of Finding a Cure

Although the participants in the discussion at our table were from a variety of backgrounds and with different associations with tinnitus, we all agreed that a tinnitus cure means silence.

Listening to the views and priorities of those involved in research, I learnt so much about the technical challenges of finding a cure. There are a number of issues which can impede the progress of research, and

there are matters to be considered before progressing studies further. Some of the topics discussed are outlined below:

  • The Importance of Research Into the Subtyping of Tinnitus

There isn’t just one type of tinnitus, in fact, there are many different forms of the condition.

Tinnitus may occur as a consequence of excessive noise exposure or be caused by disorders which affect the brain’s auditory function. Some types are related to the sensory system and others are a result of muscle contractions. There are also subtypes of the condition such as musical and pulsatile tinnitus. More focus needs to be placed on further identification of tinnitus subtypes in order to facilitate more targeted research. 

Co-founder of Tinnitus Rooms support group, Louise Hatch stated, “We need funding and research into subtypes of tinnitus – it needs serious attention in its own right.”

  • Difficulty Measuring the Effects of Tinnitus

Currently, there is no objective way to diagnose or measure the effects of tinnitus.

The effects of tinnitus are subjective and hence hard to measure. For some people, the symptoms of tinnitus may not affect their daily lives and others it can have a huge impact. This doesn’t necessarily mean however, that one patient’s tinnitus is more severe. Some people are able to manage tinnitus more successfully than others.

The severity of tinnitus for patients may also fluctuate due to other factors, such as tiredness, weather changes and mindset. Since the effects of tinnitus are hard to measure, it is difficult to compare results in studies and for this reason, efforts to make advancements towards finding a cure are hindered.

  • The Pursuit of Identifying Biomarkers for Tinnitus

At present, a biomarker for tinnitus has not yet been determined.

A tinnitus biomarker is a characteristic identified in blood or the body that provides a measurable indicator of the presence of the condition.

The presence of a biomarker would be physiological evidence that a patient has tinnitus. If researchers are able to understand the mechanism of tinnitus, then they will be able to measure changes or progression of the condition, and the effectiveness of treatments can be evaluated objectively.

  • The Need for a Tinnitus Database

Dr Charles Large (CEO, Autifony Therapeutics), highlighted the benefits of creating a national tinnitus database with regards to moving forward with research:

“Absence of a UK-wide register of tinnitus means patients are being missed. Research trials would be the first to benefit but more importantly, it would benefit the whole tinnitus community.”

  • The Nature of a Cure

It is not yet known what form a cure will take. Tinnitus researcher, Dr Will Sedley, explained that to find a cure, researchers need to understand every level of interaction between the brain and ear, with regards to the condition. They need to discover a way to teach the brain to distinguish between real sounds and tinnitus and to filter out the latter.

The cure could take the form of a pharmaceutical drug or perhaps a further-developed type of sound-based therapy. We just don’t know yet.

  • More Tinnitus Awareness Amongst the Medical Community

Dr Will Sedley stressed the need to make tinnitus a more attractive area of research to medical students. He stated that “This is one of the most unsolved medical problems”, yet he doesn’t remember tinnitus ever being mentioned in medical school, or any question referring to it in exams.

  • Where to Allocate Funding?

If the government provides more funding to tinnitus research, it will need to be decided where the money will be allocated.

Tinnitus is not an illness in itself but rather is a symptom of a pre-existing condition, such as hearing loss, stress, inner ear disorders or migraine. Since there are various potential causes of tinnitus, do we put money into restricted tinnitus research or use it to fund other groups of research with a focus on illnesses where tinnitus may occur as a consequence?

By funding other areas of research, there is a possibility that a cure for tinnitus could be found as a result of curing an underlying condition.

What People With Tinnitus Want to See

Before the event, I spoke to some of my blog contacts, and for an opinion, much closer to home, I also contacted my dad, whose life has recently become affected by tinnitus.

Detailed below are some of the hopes people who are living with tinnitus have for future research, which largely coincide with the opinions of those at the event, who work within the area of tinnitus support:

  • More Support From GPs

A large number of my contacts expressed a desire for more help from the medical community for people with the condition. Some, including my dad, had experienced discouraging consultations with their doctors and were simply told to “get used to it”. Many people hadn’t been offered advice or support on how to manage tinnitus nor had they been referred to sources of emotional support. Perhaps successful guidance from GPs begins with specific tinnitus-management training?

During the discussion, Megan Gill (Tinnitus Hub support forum representative) emphasised how “Patients want to be heard and have a voice in research.” She spoke about the desire patients have to be listened to, and to be part of the journey of rehabilitation and eventually a cure.

  • Tinnitus Awareness and the Effect on Mental Health

Megan stressed the need for more awareness of the potential impact of tinnitus on mental health.

According to a survey carried out by Tinnitus Hub, 64% of tinnitus patients reported that the condition had caused them mental health issues, with stress, anxiety and depression being the most prevalent.

On this theme, a large number of my contacts emphasised the importance of having the hope of a future cure.

Of course, whilst a cure does not currently exist, acceptance of the condition is key in moving forward and it is important for those affected to find a way of managing their symptoms to improve their quality of life. Yet, the reassurance that researchers are working to find a cure, can give those affected a level of mental comfort.

More awareness of the interrelation between tinnitus and mental health issues could have a positive effect on fundraising efforts and more researchers may be likely to embrace the challenge of finding a cure.

  • Prevention Measures

Speaking as a voice for musicians and DJs, Anne Savage highlighted the importance of promoting tinnitus prevention measures. As a Plug’em ambassador, Anne is passionate about reducing the stigma of wearing earplugs to protect hearing in environments with potentially dangerous volume levels such as gigs, festivals and clubs. In the discussion, it was suggested that perhaps there is a need for more strict decibel restrictions in the UK.

As a former teacher, I wonder whether this is something that needs to be addressed in schools, starting with a focus on volume levels in the classroom?

  • My Thoughts

Personally, I hope for more international interest in tinnitus research. I feel that this is a worldwide condition which needs a worldwide solution. I’d love to see collaboration between research institutions around the world where key focus areas of study are agreed. 

Surely, creating strong communication links in the research community and sharing outcomes and discoveries, could help drive research forward with more dynamism and impact.

Moving Forward Towards “a World Where No One Suffers From Tinnitus”

To summarise, the main priorities from the discussion were as follows: 

  • Create a UK tinnitus registry
  • Focus research on identifying biomarkers for tinnitus
  • Raise awareness of the effect of tinnitus on mental health
  • Promote prevention measures, e.g. more strict decibel restrictions in the UK

The British Tinnitus Association will combine the recommendations from both discussions and present them to government ministers in order to move forward the search for a tinnitus cure. 

The Secretary of State for Health and Social Care, Matt Hancock, has already taken an interest in raising the profile of tinnitus research on the political agenda. “I am very happy to look specifically at the case for increased research funding into tinnitus and to work with [Sir John Hayes] on it,” he responded, following the roundtable event.

It was an honour to take part in such a lively and positive discussion. I feel that bringing this level of awareness to tinnitus is a very positive step towards finding a cure. And, for me, I have a little more hope that I will one day be able to enjoy silence again.

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This article was recently featured on The Limping Chicken – the world’s most popular deaf blog! 

CROSSSD Study – You Can Help with Vital Research!

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I recently came across an interesting research project, whilst browsing on Twitter. The purpose of the study was to help develop the research of treatments of single-sided deafness (SSD), making it easier and quicker to find out which treatments work best and why.

As someone with SSD, who has been unsuccessful in finding an aidto help overcome the difficulties imposed by this type of hearing loss – namely challenges in localising sounds and understanding speech in noise – I was keen to do whatever I could to help support this research project.

The study is part of a PhD being undertaken by the audiologist and researcher, Roulla Katiri, and is supported by the National Institute for Health Research (NIHR), Nottingham Hearing Biomedical Research Centre (BRC). I wasn’t sure whether I would be able to participate since I am currently living in Spain and the project is based in the UK. So, I sent a message to Roulla to see if there was anything I could do to help. Roulla’s reply was simple and clear – since I have been diagnosed with SSD over 12 months ago and have trialled a hearing aid, I was a perfect candidate to take part in the consensus.

Here’s a little bit more about the study…

The purpose of the study is to develop a common set of ‘outcomes’ to help researchers decide whether a treatment works. In the field of treating SSD, ‘outcomes’ are the things that should be measured when deciding if a hearing aid or an auditory implant is effective.

Examples of ‘outcomes’ are:

  • The ability to localise sounds
  • The impact of SSD on quality of life
  • The ability to hear in noisy places such as restaurants

Different research studies often measure different outcomes, meaning it can be difficult to compare or combine measurements. This makes it hard to identify which treatment works best. If all future studies measure the same common set of ‘outcomes’, research can be moved forward faster.

This is all explained really nicely in this short video (2:19 running time):

The information gathered from this study will help others with SSD; and audiologists, like Roulla, to be able to recommend the best treatment for SSD, when considering the individual requirements of their patients.

My experience completing the study…

As a participant, I was provided with very clear information about the purpose of the study, how to complete it, and how my information would be used.

The survey is comprised of tables of outcome statements like the one shown below:

Snapshot 1

All I had to do was score the outcomes as to how important I felt they were to measure, for SSD treatments according to my own experience. To do this I was required to select a score on a 1 – 9 importance scale, by simply clicking on the relevant part of the table.

Before completing the study I was a little concerned. This is a cause I am very passionate about, and I was worried about making the wrong selections. However, I soon realised that there couldn’t be an incorrect answer – my opinions were all that mattered. I was also slightly worried I might change my mind about some of my scores, after submitting the survey. But, should this be the case, there was going be a second round of the study, where I would have the opportunity to view a summary of the other participants’ scores for each outcome. If I wished to change any of my scores, after reconsidering my initial decision, I would be able to do so in Round Two. I really couldn’t go wrong!

The phrasing of the outcomes was easy to understand and the survey took approximately half an hour to an hour to complete. If I felt particularly strongly about any of the outcomes, I also had the opportunity to add a comment. If I had needed to take a break, there was the option to save my progress and to continue when I had time.

Who can take part?

You can help if you are:

  • A member of the public with severe-profound SSD for over 12 months
  • A healthcare professional with experience of SSD, such as: 
    • Audiologists
    • ENT doctors
    • Funders, relevant charities workers e.g. Ménière’s Society, researchers around the world who work in the field of SSD

If you don’t satisfy any of the above criteria, you can still help by increasing awareness of the CROSSSD study. You can share this blog post, or the relevant information, on your social media platforms. Or, you can simply mention the study to friends or family members who have SSD, or who know someone who does.

It is an international study. The more diverse the applicants, the better the overall representation of people will be – from all walks of life, all ages, and from around the world. If the survey is completed by people from a wide variety of different backgrounds, this will give researchers a better understanding of the key outcomes that will help provide effective treatment for the greatest amount of people.

A final note…

It’s so great that this research is being conducted and I am really happy to be able to help contribute to this study and to give my opinion on what really matters regarding treatment for SSD.

The unique challenges that come with living with SSD are not limited to hearing difficulties. People with SSD may also be living with other related issues such as tinnitus, sound sensitivity and fatigue. Those affected may experience psychological and social issues due to difficulty following conversation, which can make communication at social events exhausting, causing stress, anxiety, and reduced self-esteem. Hearing difficulties and mental health issues can also put stress on professional and personal relationships. And, possibly the most difficult issue is that SSD is invisible; people with SSD may feel alone and isolated in their daily struggles.

Please, take a moment to share this post or the information below. And, if you satisfy the criteria to participate, please take the small amount of time to complete the study. It’s quick. It’s simple. Your help could vastly improve the lives of people with single-sided-deafness.

For more information, visit the following website: www.nottingham.ac.uk/go/CROSSSD

Or contact Roulla to register your interest: roulla.katiri@nottingham.ac.uk

The study will close beginning of November 2019.

Action On Hearing Loss Fundraising Campaign

Hello, blogging friends!

I am taking another short pause from my story to share something with you all that I am so happy about.

A few months ago I was contacted by the UK charity Action On Hearing Loss. They wanted to know if I would be happy for them to use my sudden hearing loss story as part of a fundraising campaign. Of course, I say ‘yes’! I spoke to them about my experiences and they asked me lots of questions about how I had lost my hearing and how this has changed my life. During the last few months, they have been writing a letter about me and my experiences, and also outlining the type of research the money raised will fund.

The aim of the project is to develop a new way of getting drugs into the inner ear more effectively than the current method of injection through the eardrum. With the injection, very little of the drug gets through, and the treatment is rarely successful. This is because the inner ear is very difficult to reach. The project is developing a ‘magnetic injection’, whereby tiny iron particles can be used as carriers to deliver drugs to where they are needed. The team has developed a system which uses a magnetic field to ‘inject’ drug-carrying particles across inner ear membranes and into parts of the ear that are not normally accessible.

This could enable effective treatment of people with sudden hearing loss, as well as other types of hearing loss, tinnitus and vertigo.

Today the letters for the research appeal are being mailed to the charities supporters!

Here is a link to the webpage for online donations for you to take a look at:

https://www.actiononhearingloss.org.uk/you-can-help/donate/sudden-hearing-loss-treatments/

UPDATED: Link now expired due to end of the campaign. You can view information about the campaign in the newsletter below:

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I am so happy that I have been able to get involved with something that means so much to me. I really hope that enough money will be raised, and hopefully one day treatment will be available for people who experience sudden hearing loss 🙂