15 years since we found out I, little deaf Molly, was going blind.

I am 27 years old and have been registered DeafBlind for 15 years. I keep thinking about the hard fact that I’ve been blind over half of my life. Sighted days and memories are further away from me as the days and years past, as a person it’s daunting as a deaf person it’s pretty devastating. 

I’ve had questions like “do you remember what it’s like being sighted,” “when you dream, are you sighted?” And truthfully I don’t know how to answer these questions because truthfully I don’t know. All I know is that is I remember life being easier. 

I’m not saying being deaf was easy, but day to day I was able to get by without needing to ask for help on a daily basis. I talk a lot about being independent and I thrive to be, but when all is said and done the hardest part of acceptance was accepting I need help, and I’ve noticed as I’ve gotten older I’m less bothered asking for help when I need it. 

That said, this past year I have moved out - my guidedog Bella and I, finally live in our own little home. I’ve wanted this for a very long time, not because I am 27 because it’s of course it's not unusual for anyone any age to still live at home - but I’ve known for the past 2 years especially since lockdown that, I’ve been ready to pursue a life of full independence.  One thing I definitely have learned even just recently, that I’ll never stop needing help. That’s okay. With a progressive condition like Usher syndrome it is, inevitable,  as today reminds me, it was always going to be this way. That doesn’t stop me from doing what I can do, it just means a little help along the way will help me be where I want to me. 

2021 has been a testing year for everybody I’m sure, but for me a few good things happened, the main one I got myself a boyfriend, one who I can whole heartedly be myself with, never not shy away from being Molly - previous relationships I treated Usher syndrome like it was a part time job, I shied away from asking for help at the risk of feeling a burden. But as Usher syndrome goes, it being progressive and unpredictable with the mood swings and seasonal changes, I just cannot afford to treat it part time any more. I express constantly before anything I am Molly, being DeafBlind is not who I am but a part of who I am. 

Even when I was ‘just,’ deaf I never imagined being deaf would in any way stop me from doing life the way I wanted, and that’s one thing I miss most - the certainty knowing that although I was deaf, I coped amazingly with my hearing aids, lip reading and I didn’t resent being the only kid having hearing aids and asking people to repeat themselves constantly.

Now, as a DeafBlind person, there’s no resorting to lip reading, there’s actual things I’ve wanted to do that I’ve not, or will never be able to do for example: driving. I’ve always envied anyone who could get in that drivers seat and drive. “You’ll never be designated driver,” cor how I’ve clung to that phrase, and “it’s so expensive,” but isn’t life? As I am learning more and more since I’ve left home. 

Quite honestly I think I’ll always be a little gutted I’ll never be able to jump in the drivers seat and drive wherever I would like, just because! Times I’ve sat waiting in the car while friends went to put petrol in, or get cash out and I’ve sat staring at the steering wheel wishing, imagining - that’s something I have of course accepted, but it doesn’t make it easier. I am independent, I am able to jump on a train or a plane and travel - but we all know how awful public transportation is - imagining that being your lifeline? Cancellations, delays, inaccessible locations that requires extra Uber’s - and dare I say, the high risk of them refusing you because you have a guidedog - it’s pessimistic to say so but unfortunately it happens more often than not. 

Molly Watt Trust was set up many moons ago to help enhance the daily lives of those with Usher syndrome, and it’s fair to say we’ve done that and continue to. 

Molly Watt Talks was set up almost 5 years ago where I continue to use my voice to fight for a more inclusive planet, one that designs to be more accessible, for all services provided to be more accessible, for attitudes to be more inclusive, environments to be more accessible, workplaces to be more diverse and inclusive. 

Molly was brought onto this planet to be this person, to help others and create positive impact for others living with challenges. I am proud to do the work I do and along with the crew at Nexer Digital doing great things, we’re succeeding.

Times like today, particularly since I’m isolating (I’m fine,) I have been reflecting. 

The very realisation that I’ve been blind over half of my existence has been a bit of a reality hit for me and one that I’ve been thinking about a lot. Which is a crazy thought since I talk a lot about my story at work, and in my day to day purely to raise awareness - I know my story and many who have seen my talks know it back to front, but I’m still a little taken aback at the realisation.

So do I remember things as a sighted person? 

I really don’t know. One thing I know, is I have a hell of a lot of memories that have justified my lack of vision. My experiences will forever be talked about, I will always be an open book since that’s just my personality.  Over the years it’s been hard to talk my Deafblindness, but like it or not, it’s brought me here. I didn't feel overly 'different' as a deaf child but Deafblindness has brought so many experiences I never thought possible and I have accepted never will I experience things as a hearing and sighted person, again. Those words are scary to write, but are my reality. 

I don’t resent my life, I don’t feel my existence is pointless - there were times where these were very things I thought daily. Mental health has and will always play a big part of my growth. But here I am, living in my small pad with my guidedog listening to music to uplift my spirits (big shout out to GN Hearing) and to go along with the mood I’m in, I’ve changed my flat around for the 26364738th time. I love it. This is me, Molly, 27 and Deafblind. Happy and independent.

I’ve always called it a phobia, the way I think about the future - I would avoid thinking too far forward as it would terrify me because I know my 5 degrees window of vision can only get smaller. But for the first time, ever, I am not afraid to think a little further into my future and all I see now, is me continuing as I am, this time with a boyfriend as well as selected family members (who’s family is perfect?) and few good friends - and I can say that with full confidence. 

27 years severely deaf, 15 years blind, 13 years with depression and severe anxiety > 27 years of Molly’s adventures that have not yet finished. Let’s see where the next few years take me.

What is Multi Sensory Impairment?

"Persons are regarded as deafblind if they have a severe degree of combined visual and auditory impairment resulting in problems of communication, information and mobility".

One severe impairment e.g. severe hearing loss, accompanied by partial sight or moderate sight loss still constitutes deafblindness. The reason the later or secondary loss only requires to be moderate before compounding effects are felt, is that the second sense has been relied on to compensate for the first loss. Normally a profoundly deaf sign language user who becomes partially sighted will have inherent problems with communication, access to information and mobility. In a similar manner, a hard-of-hearing person who has always lipread, when vision deteriorates at all will have problems. Equally a blind person who has relied upon sharp hearing will have real problems if hearing substantially deteriorates.

So how should somebody of school age with this condition be supported?

A teacher of the deaf or teacher of the visually impaired is not enough, there must be a multi sensory impairment specialist involved. 

In our area we found support for deaf children outstanding. At the beginning it was very full on, literally bombarded with information, weekly visits from a teacher of the deaf, meeting with speech therapist, groups to attend to meet other parents and deaf children, audiology appointments regularly, details about claiming Disability Living Allowance, details about our local Deaf Children's Society and the Charity DELTA (Deaf Education through Listening and Talking) who's ethos I absolutely recommend and details about SEN (Special Educational Need) and Statementing.

It was daunting but looking back how lucky we were to have so much support and input from the Hearing Impairment Team and particularly the Teacher of the Deaf (TOD) and great input from the Speech Therapist.

We also had consistency and accept for two or three visits Molly had the same TOD from pre-school through to almost 14 years old.

Lots of hard work went into supporting Molly on her journey as a deaf youngster and the results are clear.

Molly caught up with her peers, her speech developed beautifully and she often describes her happiest times where at nursery and primary school.

Then came the "Usher Diagnosis" at senior school.

Confusion best describes the next chapter:

Deafblind, no qualified teacher to work with the deafblind but there are Visual Impairment Specialist (VIS) teachers, Molly will have a senior one!

All well and good but a TOD and a VIS do not add up to a Multi Sensory Impairment (MSI) Specialist.

There was the honesty that neither the Deaf nor VI teams were familiar or experienced in supporting somebody with Usher Syndrome - somebody needed to be trained' it would take 3 years for somebody to be qualified!

In the meantime MSI support had to be bought in from Sense to support not just Molly but the team around her and that was to include teachers and teaching assistants at the school as well as advise the TOD and VIS.

The one thing that became ever obvious was the sheer exhaustion deafblindness brings along with mobility issues and acceptance.

Acceptance made ever harder by the ignorance surrounding the condition.

For us there was a grieving period, which was very painful, particularly when there is continuous questioning "You're not blind" "You're not deaf" even by those who should know better.

The cruelty of an invisible disability makes acceptance all the harder, the continuous questioning often leads to a very unhealthy and unacceptable denial which again has its problems.

The desire to just "fit in" never goes away and then the need for acceptance from all.

Acceptance and understanding in education, acceptance and understanding in the work place and acceptace in general is required and it really isn't a big deal to know the basics.

I cannot and nor would I want to speak for the entire Usher Community but where my own daughter is concerned she wants to get on with her life, to achieve what she can and more important than anything she wants and deserves to be happy.

In order for her to have those few things all she needs is to be accepted as the person she is and to be understood and what is more she is the expert on herself!

At this stage direct support can be achieved by simply asking!

In the workplace potential employers should be aware of the diversity and unique skill set people with usher syndrome can have, how much value they can bring to any workforce.

Like us all they just want that chance.

I think they call it "Thinking outside of the box".

Retinitis Pigmentosa (RP) has always been something that I've denied but this year as I turned 39 it became clear I couldn't deny it anymore.

I was 7 years old when the news came that there was RP in my family.  My sister was the first of us to be officially diagnosed it was the early 1980's and there was very little information around then she recently told me that back then she was informed by the specialist at Moorfields that there was no cure or treatment, she would most likely go blind and not to have any children!  However, she now lives in San Francisco with her husband and two amazing children Lauren and James both in their early twenties and both unfortunately have RP.

My memories of that appointment are vague all I remember is having eye drops that made me unable to see for a few hours which I remember was scary especially at 7 years old. From there on I didn't think about it, RP was just an occasional conversation piece that we had an uncurable eye disease in the family that might make me blind but probably not until I was very old!

I continued to live my life and was lucky enough to have an amazing one with many extreme highs and lows enough to write a pretty good book but that's for another time. I travelled the world working as a singer beginning my career as a Bluecoat at Pontin's and eventually becoming a touring cabaret act performing at holiday parks and hotels all over Europe. My travels eventually took me to Glasgow where I began to settle and build a new life. RP was still very much at the back of my mind even though I knew I was struggling with going from light to dark places, by this time I was in my mid twenties. I was building a career in car sales was in a relationship and the years began to fly by without much thought of my eyes.

By the time I reached my 30's my thoughts turned to becoming a father, I never entertained the idea before, nothing to do with RP just down to having too much fun working in entertainment. On November 4th 2007 my life changed when Ellie was born, I took to being a dad as naturally as I take to the stage and as the tattoo says on my right forearm "It's like a song I've never heard I've never sung but know the words" a line from one of my favourite songs which describes becoming a father.

The bond between Ellie and I was so strong unfortunately the same couldn't be said for the one between myself and her mum and the relationship came to an end by the time Ellie turned 3.

At that time I had gone back to singing again driving all over the uk performing as a cabaret again. I made the hardest decision of my life to move back to manchester to be near family and to give up singing again so I could regularly make the long drive to bring Ellie down from Glasgow. By this time even though my eyes would struggle in darkened rooms I could still drive with no problem. As hard as it was trying to start again being so far away from my little girl I knew it was something I had to do, I had a gut feeling that it would eventually work out and that's when I met Amy.

Amy came in to my life and brought with her the promise of a love filled life I thought I'd never find. Amy had two boys Harvey and Louie, Ellie and I slipped into their world like it was just meant to be.

Within 2 years together I had gone back to car sales trying to build our life we were blessed with the arrival of the cutest baby boy you will ever see Austin, he arrived in June 2013 and on Xmas day that year I asked Amy to marry me and she said yes!

We then started to plan our wedding for New Year's Eve 2014. The following year everything changed!

By May this year my eye started to get worse and a check up at the local opticians confirmed my worst most denied fear my RP had started to rapidly progress and my driving days were over. My first thoughts were of Ellie and how was I going to be able to see my little girl? My second was what was I going to tell work?

I told work straight away and they let me go on the spot as I could no longer continue my role without a driving licence.

My little families world began to unravel, I went to the specialist who confirmed me as legally blind and gave no other answers. I then went to the job centre and asked for help. From there on it has been a constant battle to try and get the help we so desperately needed but were plunged into extreme poverty falling behind with bills and just finding it extremely hard to survive due to the horrendous waiting times for PIP etc never mind not being able to see Ellie due to the cost of collecting her from Glasgow.

As the months have passed this year my eyesight has rapidly declined to the point where I have now started long cane training and am on the list for a guide dog to try and get back the independence I have lost as I now suffer with anxiety due to my vision loss my confidence has all but gone and I very rarely go out alone.

The things that have kept me going is getting married to the love of my life on New Year's Eve as planned and meeting an amazing friend in Simon who I met through one of the facebook RP support sites on the advice of my sister in San Francisco.

Simon has Usher Syndrome Type 2 and it was obvious from the start we had so much in common other than our crap eyes. We shared a love of music and the same sense of humour. He is my best man for the wedding. When simon and I became friends he invited me to come round to his house as he had a mini recording studio so I could sing and let off some steam. Here began the start of a little confidence returning and the idea for my RP project.

Simon and I had held a couple of informal meetings with other RPers and that's where we met Colin who also has Usher Syndrome Type 3, a very special person who was equally passionate about connecting those who felt alone.

As time and eye sight went by I became more vocal and passionate about the injustices visually impaired/blind people were going through all over the world and that's where "Stand By Me RP" was born.

I was asked to perform at a meeting for people with RP and Ushers in the north and decided to created a theme song for us that I could share worldwide, I decided to use "Stand by me" http://youtu.be/qxFdmqZoceo because everyone knows it and then I re-wrote the lyrics around the fears a lot of us have. Through the support of the VI community and the amazing people who have responded to the video and continue to keep sharing it the message has reached place and people I never thought I would reach.

Molly and her incredible family and Joanne Milne who's story reduced me to tears in seconds in fact I have written a song about Usher Syndrome for Jo which we will unveil together in the near future. All of a sudden my future looks good again I am determined to take the disease that has stripped me of my confidence and use it with my passion for music to help as many as I can whilst in turn helping me find me again. Amy and I are stronger than ever and our wedding is only weeks away and even the recent trip to the specialist who confirmed that my central vision is deteriorating fast could not dampen my new found spirit. I will begin 2015 a married man and plan to fight to raise awareness for RP and Ushers with your help of course

Hello! My name is Rick Brouwer, I am 49 years old and I live in Vlaardingen; a city near Rotterdam in The Netherlands. In the foto (left) you can see me running with a buddy. Yeah, that is also possible even when you have USher Syndrome!  On 15 November at 7pm, 7 UShers together, participated in the 7 km night marathon over the  7 hills of the city of Nijmegen and I was one of them. It was an amazing  experience. We Ushers had not only our buddys, families, neighbours and friends running with us but also doctors from the Radboud hospital. This was our first campaign to raise funds to support further scientific research on a hopeful therapy for Usher Syndrome type 2a, which has already started at the Radboud hospital. I will tell you a bit more about it but let me first share my own story. 

The first time I heard of Usher Syndrome was when I was 18 years old. My sister who was 14 years older than me got diagnosed with Usher Syndrome. Due to the fact that I was already wearing hearing aids, my brother in law and my sister asked me to get myself tested too. At that time I was in denial and I refused to believe that I could even have Usher Syndrome. Six years later at the age of 24, I was  driving my car and I almost caused an accident. This was a sign for me to investigate the possibility of having Usher Syndrome.

The doctor in Amsterdam diagnosed me with Usher Syndrome. It was a slap in the face. I was already in a long-term relationship with my wife and the doctor told me that it would be best to have children asap. This way I could still see them growing up, as I would go blind later in my life. I thought that it was a very strange remark!

My children are 22 and 16 years old at the moment and I still can see them despite my very small tunnel vision of about 10 degrees.

After that visit to the hospital I never drove a car again.

It felt quite bad that I could not drive my car anymore, it felt like my freedom and my independence were taken away.

The years after that I totally ignored my visual impairment, this way it did not feel so bad!

I had a nice career in the local council as a financial consultant. Yes I did use a cane and magnification software on my computer, but I did my best to remain part of the "normal" hearing and seeing world.

Until two years ago, where I realised that I could not take it anymore! I had burn-out and I decided together with The Royal Dutch Visio, an organization specialised in people with visual impairments, to follow a rehabilitation program. During this intensive program, I came to terms with both my visual and hearing impairments. I learnt how to pay attention to the signals that my body sent when I was getting tired. This was something that I had neglected for many years! Listening to my own body, setting my own limits are and not just do what everyone expects from me.

After my revalidation, I went back to my job on a part-time basis and I am now busy creating a new job. I want to focus on sports for disabled people. I believe that I have a lot to offer using my own experience as deafblind runner and board member of the Running Blind Foundation in The Netherlands. Always look for opportunities and follow your passion instead of remaining in the shadow.

November 2011 was also a turnaround point for me. The Usher Syndrome symposium in the Netherlands! Since then I have accepted my Usher Syndrome even more and I want to get in touch with more peers with Usher Syndrome. During that symposium, I experienced how much I can learn from my fellow sufferers.

 I am also an advocate to bring Ushers in Europe and beyond in contact with each other. Creating more #usherawareness is very important.

At the moment, I am busy with some other fine Ushers setting this up! Keep an eye on www.ushersyndroom.nl!!!  We will soon go live and next to our Dutch website, you will also be able to find all important information translated in English. I also hope to meet Molly in person one day during an International Usher Day or Usher conference in The Netherlands or in England or in Ireland [Symbol].

De vrolijke groet van Rick

I guess you could always say I was unique from the time I was born.  My mom had complications from the start of her labor with me, her water broke but instead of coming out it went inside and essentially I was drowning in the womb!  I survived, of course, however it was just the start of the life I would about to live. 

The day before my 3rd birthday was the start of many surgeries in my childhood (I had over 30 but lost count of the official number) due to the result of my Eustachian tubes not being fully developed.  The doctors just assumed because water remained in my ears for so long undetected, that was the reason I suffered from nerve damage which lead to moderate/severe hearing loss in both ears. 

When I was younger, I can recall always being able to see at night, running around the racetrack as my dad was an avid dirt car driver at a local track.  Then one year, it almost seemed to disappear.  My mom would try to bring it up to my eye doctor and he would just say I was clumsy!  I guess randomly running into walls or people would appear that way, but in my defense I honestly didn't see them.  As time went on, I just took what I saw as something everyone else did and always wondered why I couldn't see very well when everyone else seemed to just fine.  About 2 years ago is when I really noticed a change, but never in my wildest dreams would I have guessed I was going blind!

In April of 2014, I decided to get my eyes checked up at Sears Optical since they had a sale on eyeglasses and seemed to be more affordable than any other location in the city. What started out as a typical eye exam ended up being something so much more.  I was referred to a retina specialist at RVC (Retina Vitreous Consultants) here in town.  Only 4 days later, I found out I had myopic degeneration and he (Dr. Bergeron) wanted me to see another retina specialist (Dr. Rath) within the next 2 weeks.  After I saw Dr. Rath, she examined me and then said quote, "There's something really serious going on and we need to find out what exactly so we're sending you to Pittsburgh for extensive tests."  I remember sitting there in a surreal feeling as if I were listening to this from outside my body.  It definitely hit me upside the head and not in a good way! Needless to say I cried a lot over the next few months until the testing in July.

After my tests were done in Pittsburgh, it confirmed that I had RP or Retinitis Pigmentosa (Rod/Cone Dystrophy) and that I would be legally blind within a year or two.  Dr. Rath was very surprised I could see as well as I can since the damage is extensive she said. I didn't get a set degree of vision, but I see out of a square like shaped box of sorts. 

After my RP diagnosis, I did some research of my own into what causes the disease and so on.  I came across an article that described Ushers, and to my astonishment, Ushers Type 2 was a dead ringer for everything I had.  I was born with moderate/severe hearing loss and more recently, the RP.  After my latest hearing test, Dr. Rath as well as my audiologist confirmed that I had Usher's Syndrome Type 2.  In March of 2015, I hope to get genetic testing to confirm everything in black and white.  I think it's crazy to know that just 400,000 people, or 0.006% of the population, has one of the three types of Ushers!

As if the Usher's isn't enough to deal with, I've also dealt with a lot of health conditions and just within the last 5 years, I've been diagnosed with diabetes, high blood pressure, edema, gout, rapid heart rate, and a heart murmur!

Rest assure that this will NOT slow me down.  I've worked since I was 17 (a junior in high school) and went to college 3 different times and have 2 associate's degrees, one in management/computer applications and one in accounting.  I had to delay pursuing my Bachelor's in Accounting due to financial issues.  It bothers me to know I'm just 2 courses shy of graduating but $1800 short of paying the tuition!   But nevertheless, I've never backed down from a challenge.  People would tell me when I was younger that I couldn't do something and I would work hard to prove them wrong! 

I'm used to the whole hearing loss issue, however I'm not used to losing my eyesight and I don't think I ever will.  I'm reminded over and over again that I'll never see like I used to.  Every time I go to read an article or watch a movie, I see "snow" and white rings floating around.  As frustrating as it may be, I know that I'll continue to fight until the end.  Because let's face it, I was born fighting my way into the world and I'll definitely go out fighting as well!

What does Ushers Syndrome mean? That was the very question I had asked myself when the doctors told me I had lost some of my eyesight and that I would very slowly continue to lose more. I didn't think they were telling the truth at first. How can you live your life and not know that you are are somewhat blind? My name is Clare Weigel, I'm from across the pond in Florida and I am 17 years old. I had the pleasure of going to the Boston Ushers Syndrome Coalition over the summer where I learned I was not alone. 

Before I found out, I had no idea that this had been slowly happening over the years and caused my deafness also. This all began with a routine eye doctors appointment. The doctors saw something wrong with my retina and I was sent to a couple of other places until the place where I had a full day of long, tiresome tests that included one with flashings lights in a pitch-black room for over two hours and many more. The irony is, that as I went through all of this, was that I thought they weren't going to find anything wrong.

After the tests were completed, I was in shock when they first told me, no tears nothing. Then they said it was illegal for me to drive, then all of my emotions came flooding out, whatever little independence I had, was gone. I had lost all of my peripheral vision and night vision, but still maintained good central vision. But I would slowly lose more. 

After, I kept it to myself, worried that people were going to treat me differently, like I was handicapped. Which in reality, I was. I had tripped over backpacks in the hallways at school, run into people since I couldn't see them, and stumble around hopelessly at night since the disease also took away my night vision. People think I'm rude if I can't see them if they're right in my blind spots. I often wonder if I should really tell them the truth. This is one of the "hidden disabilities", it's not always noticed that I'm deaf. Now I was categorized with the "blind" people as well. 

For months, I would think about it and wonder why had God given me more problems? It was already challenging to be deaf but to be deafblind?  I already had problems of my own, I didn't need this. Then, I began to tell my closest friends and I was amazed. They were nothing but helpful and kind about all of this! They guided me at night, listened while I ranted about the unfairness of it all, and they were there for me. Now, I know that people are genuinely good at heart if you are willing to give them a chance. 

When I was on a choir trip with my school to Jamaica last spring, we were singing to people who had less than us and they had pure joy in their hearts. I wondered if I could be as joyful as they about my disease? Then we went out one night as a break from singing, we were on a catamaran boat. We left in the late afternoon and as we were out on the blue waters, I realized the sky was getting dark. I was slightly panicking because there weren't any lights at all on the boat or the dock (which we had to cross over another boat to get to) then I realized I needed to ask for help. I absolutely hate asking for help! However, I asked a friend of mine who was more than kind enough! I learned a big lesson from that trip, I need to be happy with Ushers and know it is perfectly okay to ask for help.

I am a cheerleader for my high school and often, I have difficulty hearing the counts/calls for cheers and seeing the girls next to me at football games. But it's a challenge which I am willing to take on and love doing! 

At the Ushers Syndrome Coalition, I met so many wonderful people who inspired me to think of Ushers in a positive way and its just a part of our identity. I met Molly at the family dinner and I was so excited just because she was British! Then as I talked to her, I had a realization that I needed to pull it together and get over the fact that I was deafblind. 

There are still moments where I wish I could be able to do some things that my friends get to do since a lot of it is usually in dark and loud places. But I've learned over the years that I'm not really missing much. 

What is Ushers Syndrome? It's not a disease, it's just a part of me.

What does Ushers Syndrome mean? That was the very question I had asked myself when the doctors told me I had lost some of my eyesight and that I would very slowly continue to lose more. I didn't think they were telling the truth at first. How can you live your life and not know that you are are somewhat blind? My name is Clare Weigel, I'm from across the pond in Florida and I am 17 years old. I had the pleasure of going to the Boston Ushers Syndrome Coalition over the summer where I learned I was not alone. 

Before I found out, I had no idea that this had been slowly happening over the years and caused my deafness also. This all began with a routine eye doctors appointment. The doctors saw something wrong with my retina and I was sent to a couple of other places until the place where I had a full day of long, tiresome tests that included one with flashings lights in a pitch-black room for over two hours and many more. The irony is, that as I went through all of this, was that I thought they weren't going to find anything wrong.

After the tests were completed, I was in shock when they first told me, no tears nothing. Then they said it was illegal for me to drive, then all of my emotions came flooding out, whatever little independence I had, was gone. I had lost all of my peripheral vision and night vision, but still maintained good central vision. But I would slowly lose more. 

After, I kept it to myself, worried that people were going to treat me differently, like I was handicapped. Which in reality, I was. I had tripped over backpacks in the hallways at school, run into people since I couldn't see them, and stumble around hopelessly at night since the disease also took away my night vision. People think I'm rude if I can't see them if they're right in my blind spots. I often wonder if I should really tell them the truth. This is one of the "hidden disabilities", it's not always noticed that I'm deaf. Now I was categorized with the "blind" people as well. 

For months, I would think about it and wonder why had God given me more problems? It was already challenging to be deaf but to be deafblind?  I already had problems of my own, I didn't need this. Then, I began to tell my closest friends and I was amazed. They were nothing but helpful and kind about all of this! They guided me at night, listened while I ranted about the unfairness of it all, and they were there for me. Now, I know that people are genuinely good at heart if you are willing to give them a chance. 

When I was on a choir trip with my school to Jamaica last spring, we were singing to people who had less than us and they had pure joy in their hearts. I wondered if I could be as joyful as they about my disease? Then we went out one night as a break from singing, we were on a catamaran boat. We left in the late afternoon and as we were out on the blue waters, I realized the sky was getting dark. I was slightly panicking because there weren't any lights at all on the boat or the dock (which we had to cross over another boat to get to) then I realized I needed to ask for help. I absolutely hate asking for help! However, I asked a friend of mine who was more than kind enough! I learned a big lesson from that trip, I need to be happy with Ushers and know it is perfectly okay to ask for help.

I am a cheerleader for my high school and often, I have difficulty hearing the counts/calls for cheers and seeing the girls next to me at football games. But it's a challenge which I am willing to take on and love doing! 

At the Ushers Syndrome Coalition, I met so many wonderful people who inspired me to think of Ushers in a positive way and its just a part of our identity. I met Molly at the family dinner and I was so excited just because she was British! Then as I talked to her, I had a realization that I needed to pull it together and get over the fact that I was deafblind. 

There are still moments where I wish I could be able to do some things that my friends get to do since a lot of it is usually in dark and loud places. But I've learned over the years that I'm not really missing much. 

What is Ushers Syndrome? It's not a disease, it's just a part of my life. If I had the chance to reverse it, I wouldn't do it. Because it has taught me so many things that I wouldn't know about life.f my life. If I had the chance to reverse it, I wouldn't do it. Because it ha

Hey my name is Jodie, and I am any normal eighteen year old except having to cope with this cruel condition too!
So here’s my story.. I had no clue what RP or Usher syndrome was until I joined secondary school, and had a friend in my year who was diagnosed with it, I learnt bits from her just by asking her questions about how she coped and what it was like. I knew she struggled in the dark a lot because she always asked someone to guide her around the school. I always thought to myself how brave she was coping this condition at such a young age and that I was the ‘lucky’ one that I didn’t have it. She sadly left by the end of year seven and then forgotten about Usher as I got on with my life. The Halloween night came by and I was out trick or treating with my friends and my sister, then there was a low brick wall with a street lamp above it, I just happened to walk straight into it and tripped over and bumped my head, of course my friends laughed and my mum got bit concerned about it because anybody would have seen that. Weeks went by, I began to bump into things or trip over the objects and I chose to ignore it and thought I was just being clumsy child. My mum wasn’t having it so she took me to opticians to have my eye tested, I didn’t really know what was going on and just thought I needed glasses. But until the lady said that I could be diagnosed with Usher syndrome and needed to transfer me to the hospital for further tests. I just sat on the chair froze and thought to myself this is impossible? I was only 13 years old .. My mum went hysterical and burst into tears, so we both walked out the opticians and told my dad and my sister the news, my dad fought back his tears and tried to stay strong for me while my sister started to cry. They already knew little bit about the ushers because I told them about my old friend I had in my school. 
When we got home, my mum researched more on the computer about the ushers, and I used to get really angry at her and telling her to stop looking it up and that I ‘don’t’ have it, I guess I was in denial at that time believing that the lady at the opticians had got it wrong. Then it was the day I had to go to John Radcliffe Hospital in Oxford, my hands was shaking and my thoughts were all over the place but I had to stay strong for my parents. When we saw the doctor, she tested my eyes with field vision tests and I remember the first time I had eye drops in, I hated it! Then the consultant came in and started explaining about the Usher syndrome and gave my parents books and leaflets. I just sat on that chair just blanking everything out and thinking this must be a terrible dream. I went home later on that day, and I knew I had to tell my friends at school, so I started to tell my close friends that I have Ushers syndrome and they were very supportive and already knew little about the condition. So I was little more relaxed around them because they treated me like normal and only ask if I needed help to get about in the dark. I used to be so stubborn and say ‘No’ I can cope with this all by myself and pushed my friends away when they asked if I needed help to get around in the dark, as I walked in the dark by myself, I struggled so much and got so terrified because I didn’t want to walk into something and get hurt. So I ended up telling my friends to help me get around in the dark and they understood that I wanted to be independent teenager but only needed extra help. 
Now my family and friends are all aware of my condition and learnt that they don’t need to go over the top about it and just take one day at a time, I still go to hospital appointments and yet I still moan about going or I didn’t want to do the tests and I still get frustrated when I trip over things and bump into something but that’s something I have to live with I guess? I had no one to talk to about my usher similar to my age until I met this lovely girl Molly who also had the condition. I just remember the first time inboxing her on Facebook and asking how to open up to people about my worries and I kept bottling things up inside me because I didn’t want to upset anybody and wanted them to think that I coped fine. She replied back and she was so calm and reassured me that it wasn’t good holding things in and it’s better to let people know how you’re really feeling. So I took that advice and opened my worries to my close friends and boyfriend and they were really supportive, especially my boyfriend took his time to research the condition and try to understand that I needed little support at night times and not to wave the sides when I can’t see very well, he even goes to the hospital appointments and coped my complaining about the eye tests that I had to do. He was there all along just by holding my hand and making sure everything is ok alongside by my family too.
You should never let usher stop you doing things you want to do in life, even though it may be hard but try and achieve it with extra support, I am very glad that Molly had set up the website and blogs where I can happily read people’s stories and feel a lot better about it when I know I’m not alone in this cruel condition. So I would like to say great big thank you to Molly and her family for taking their time to do this amazing website/charity to get more people to be aware of the condition. Lastly I like to say big thank you to my family for being so supportive and being there when I need it.

Well, here I am with some amazing friends and family( I'm the short one with red hair!!) getting ready to take part in my very first charity event here in Ireland to raise funds for the Fighting Blindness.ie.

It was an amazing but extremely tough challenge in the Glendalough Valley in the mountains in Co. Wicklow, especially as it was my first time partaking in such an event. Admittedly, I'm so delighted with myself for completing it and not even the sore legs can take the smile off my face. It was also a very important event for me personally, as while fundraising I decided it was time to reveal to everyone that I am losing my eyesight and that it is due to Usher Syndrome type 2. Only some of my close friends and close family knew beforehand, and even though they had given me enormous support and still continue to do so, it was time to make others aware. I wasn't diagnosed with Retintis Pigmentosa until March 2013, a few weeks before my 34th birthday. It was with complete and utter shock to learn of this diagnosis and I don't think i could ever forget that day, how could anyone really? After diagnosing me with RP, it suggested that it could be due to Usher Syndrome and I was urged to find out more about this condition. I left the ophthalmologist's office having heard his words but not comprehending what he actually meant. It was only when I got home and like everyone does, I 'Googled' it all. That's when it hit me, I'm going blind. When he spoke of my eyesight getting worse and worse but hopefully I might have good central vision for another 10/15 years, that's what he meant, I'm going blind. He talked of the possibility of gene therapy which looks promising but probably not for another 15/20 years, he meant I'm going blind and there's no cure at all. It was really difficult to believe that I was having to deal with going blind when I was already deaf. Kept thinking was this 'supposed god' having a laugh? Reading up on Usher Syndrome, I knew straightaway that it was what I had and more than likely it was type 2. It really was like reading about myself. Genetic testing later showed that I do indeed have Usher syndrome type 2 (USH2a). It was awful though, having to tell my parents that the hearing loss was in fact genetic (previously thought it was due to an infection) and that I am also going blind now. I know they did blame themselves for awhile but I'm hoping that with me being open and honest with others about it, it will show them I will be just fine. I came across Molly Watt during my first Google search on Usher Syndrome and kept thinking wow, fair play to her for all that she was achieving and not letting it hold her back. I really admired this girl and I still do!! I also came across Mark Dunning and the Usher Coalition, Megan Kennedy and many others, and the positivity and faith they had but yet being totally honest with how hard it can be was admirable. They all gave me the strength to believe that I can still achieve things in life despite it getting harder to do so. After a year and half of coming to terms with the diagnosis, I realised I didn't want to hide it anymore. I did hide my hearing impairment and I had left it to others to guess that I was so. But hiding going blind... no, that would be so draining and completely unnecessary. So I put up on Facebook the link to my fundraising page where I explained briefly what I had and how it was affecting me. It really worked out well as I had a lots of people talking about it and it really raised the profile of Usher Syndrome in my area which I'm delighted with.. Also by raising awareness of the condition I was hoping to get support and understanding in return, and that is happening. The amount of support I got was overwhelming! There is still some way to go though with raising awareness and making others understand how tough it is. But sure it's only the start of my journey with Usher and I intend to make it a posiitve one even if it does get a bit bumpy along the way.