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Sunday, 20 December 2015 19:39

Josh Dealing with Usher Syndrome Type 3

Josh’ Blog for The Molly Watt Trust

Hi, I’m Josh. I’m 22 years old and I have Usher Syndrome type 3. I was born with normal hearing and vision, unlike most other people with Usher Syndrome who are born with some form of hearing loss. 

When I was 5 years old my teacher suggested that I had an eye test as I was struggling with reading. When I went for the standard wall chart eye test the optician said that it was mainly due to a lazy eye and that it should improve with time. However they also noticed an unusual pattern on my retina so referred me to see an eye specialist at the QMC in Nottingham. After being seen by the children’s eye specialist Dr Gregson, he revealed some upsetting news to my parents. He told them that I had an eye condition called Retinitis Pigmentosa and that I will gradually lose my sight over time before becoming completely blind. Obviously this was a bit of a shock as they had never even heard of this disease before. I was given glasses to help with my lazy eye, but refused to wear them as a kid. After a while my visual acuity got better and I no longer needed to wear glasses.

As I grew up, I always knew that I had something wrong with my vision and I went to see Dr Gregson every year for regular check-ups. I was (and still am) very interested in finding out anything about my condition and knew exactly what Retinitis Pigmentosa was, and what my future entailed from a very young age. The first thing I noticed was that I really struggled at night. I always ended up bumping into or tripping over things once the light levels got lower. When it got darker my peripheral vision just seemed to disappear. 

Once I got into my early teens, I noticed that it was no longer just at night that I struggled. I often found certain sports very challenging, such as badminton. When the shuttlecock was hit high into the air I used to lose track of it completely and ended up feeling like a right idiot in front of my mates. I also played cricket and sometimes completely failed to see the ball as it rolled by me on the ground. If I ever dropped any money on the floor I’d be looking for it for a good 10-20 seconds before finally seeing it. Sometimes I wouldn’t even bother to save myself from embarrassment. All of my close friends and family knew about my condition and were always able to help me out whenever I needed it. I managed to get through school without any significant barriers and got good GCSE grades. When I was a kid I always wanted to work for NASA as a rocket scientist. I have always been good at science and maths and decided to do my A Levels in Physics, Maths and Further Maths so that I could do a degree in Physics. 

During my first year at sixth form I started to notice I couldn’t hear people properly without looking at their face. Everything just sounded muffled as though I needed to pop my ears, a bit like when you fly. I started putting subtitles on the TV so that I could hear what was being said. It got to the point where I really started to struggle hearing what the teacher was saying. After doing a bit of googling on ‘muffled hearing’, I decided that I had to go to the doctors in order to unblock my Eustachian tubes. These are the tubes that connect your middle ear to the nose, which is why you have to hold your nose when popping your ears. I read that they can sometimes get blocked up with mucus which causes muffled hearing as the ear drum isn’t able to vibrate properly due to a build-up of pressure. So I made an appointment at my local GP and was examined by the doctor. They gave me some stuff that I needed to spray up my nose in order to unblock the tubes which would allow me to pop my ears and hear properly again. This didn’t work.

After a few weeks of trying with no success, the doctor decided to refer me to an audiologist to have a hearing test. By this point my confidence was at rock bottom as I was really struggling in class and found it hard to have a conversation with anyone without asking them to repeat themselves a lot. It’s alright to ask someone “Sorry, what was that?” once or even twice, but once you haven’t heard them for the third time it gets pretty awkward. I went to the King’s Mill Hospital in Mansfield for my first hearing test which I found extremely difficult. Since I didn’t know what pitch the beep was going to be, I found it really hard do as sometimes you think you are hearing something when you aren’t (I’m sure those of you who have done a hearing test can relate to this). After my test the audiologist seemed quite surprised. I remember him saying “How have you managed for this long with this level of hearing loss?” As it turned out I had sensorineural hearing loss in both ears, which meant it was to do with my cochlear and not my tubes after all. 

I was told that I would need hearing aids in order to make my hearing as ‘normal’ as possible. At first I was extremely shocked and really didn’t want to wear them. I asked him if there was an alternative, which he simply replied “no, not really”. I had my hearing aid moulds taken that day and an appointment was made a week later in order to have them fitted. On the way home I realised that what my auntie had told me a month or two ago about a woman she knew with Usher Syndrome was a big possibility for what I had. At first I was a bit dismissive of the idea that something could possibly cause deafness and blindness. “How on Earth are the eyes and ears related in anyway?” is what I said when she first told me about her friend. I googled it as soon as I got home and it suddenly hit me. I realised that I wasn’t just going blind, but also deaf as well. After a few hours of research, I concluded that I must have the rarest type of Usher Syndrome, type 3. This is because those with type 1 and 2 are born with some degree of hearing loss whereas I wasn’t.

The following week I had my hearing aids fitted and suddenly the world came alive again. I could hear myself breathing again, I could hear the trees rustling in the wind, and more importantly I could hear speech more clearly again. It was bittersweet though. I was extremely pleased I could hear properly again but I was very nervous about what people would think when they saw I had hearing aids. I was surprised how well everyone responded though; those who had known me for years were quite shocked to find out but were very supportive and understanding. Those who didn’t know me before didn’t seem to bat an eyelid and it seemed as though they didn’t even realise I had hearing aids at all. Suddenly I had gotten all of my confidence back and no longer worried about having conversations with people or needed subtitles on the TV. I was now able to hear what the teacher was saying again and manged to pass my A Levels to study for a BSc in Physics with Astrophysics at Nottingham Trent University.

At first I was very nervous about going to uni, moving away from home, living with new people, meeting new people, etc. After all my confidence did take a pretty severe battering during sixth form with the onset of my hearing loss. I was particularly worried about fresher’s week. Not because of my hearing, but because of my eye sight. I had never been clubbing before and wasn’t sure how my eye sight would be in a night club since they are quite dark. Once I got there and moved into the student accommodation on campus and met my flat mates, I felt rather comfortable. Everyone just seemed so friendly and welcoming and all of my anxieties just went away. I had the best time during fresher’s week and went out pretty much every night. I think being intoxicated with alcohol was certainly a help in this scenario, as people just assumed you was drunk (which I was, but still) when you bumped into them. I met some great friends on my course and the first year went really well. I was getting over 80% in all of my coursework and was on track to get a 1st overall in my first year. I was ready for the end of year exams and looking forward to the summer afterwards. Then yet again, something went wrong.

Literally the day before my first exam, I was back at my parents about to get the bus back to uni when I realised a ‘curtain’ coming across my right eye. From the bottom left corner it seemed as though someone was covering up my eye with a piece of paper. I rang my dad straight away and googled ‘curtain across the eye’. I knew almost instantly that my retina in my right eye had started to detach and that I needed to go to the hospital as soon as possible to have it stuck back on before the cells started to die off. We rang the QMC and got an appointment on the same day in the emergency eye clinic. I was seen by a specialist called Dr Orr who confirmed my suspicions. I was scheduled for surgery early the following morning, where I underwent an operation under general anaesthetic to glue my retina back in place. They also lasered both of my eyes around the outside of the retina to make sure it didn’t happen again. They put oil into my eye which is lighter than water in order to help the retina stick back in place. However, this meant that I had to sit in a ‘posture’ position with my head looking down for 50 minutes of every hour, every day, for a week! As you can probably imagine, this was an absolute nightmare. In case you hadn’t already realised, this meant that I had to miss all of my first year exams which I had revised for. After a week I was seen again by Dr Orr who said that the surgery had been a success and that my retina was back in place.

Having spoken to the university about my situation, they agreed to let me sit my exams during the resit period as a first sit. So throughout the summer I made sure I kept on top of my revision as well as enjoying myself. Throughout the summer I realised that the vision in my right eye was not as good as it used to be. Firstly I had lost a significant amount of peripheral vision, but it also started getting rather cloudy as though I was looking through a misty bathroom window. I went back to see Dr Orr who said that I had developed a cataract, which is common after retinal detachment surgery. Later that week I underwent another operation under general anaesthetic to remove my cataract and replace it with a plastic lens. This helped reduce the cloudiness but my peripheral vision was not improved, which implied it was due to my retina being damaged from the retinal detachment. Just another thing I thought I’d add, retinal detachment is not a symptom of Usher Syndrome and could literally happen to anyone. I’m just a bit unlucky I guess!

Anyway, later that summer I sat my first year exams and managed to get 83% overall in my first year, which I was extremely happy about. Before I knew it second year was underway and I had moved into a house with six of my course mates. It was a great year and I had a fantastic time with memories that will last a very long time. There was a slight hiccup however *sigh*. One Saturday I ‘woke up’ in my bedroom not seeming to know what was going on. There was cereal all over the floor and I didn’t seem to know what day of the week it was or what I was meant to be doing. After cleaning the cereal up and finally coming to realise it was a Saturday, I had a chat with my mate about it. He said that his friend has epilepsy and it sounds a bit like that. I booked an appointment at the doctors who sent me to a neurologist at the QMC. His name is Dr Maddison and he reminds me of Dr Who. He suggested I had an EEG, ECG and an MRI scan. There were no significant abnormalities found, apart from a slight loss of volume in my posterior hippocampus, which suggested temporal lobe epilepsy. He prescribed me with some medication which I still take to this day, although I still occasionally have seizures. They often cause me to have an extremely intense sensation of Déjà vu and I feel detached from my surroundings. People who have witnessed my seizures say that I smack my lips and start fiddling with my clothes. Most of the time they fade out, but occasionally I get temporary amnesia where I forget what I am doing, where I am, what day of the week it is and just get really confused in general. Again, not a symptom of Usher Syndrome, just bad luck!

Dr Maddison was aware of my vision and hearing problems and said that I could have a mitochondrial disease, which doesn’t just affect the eyes and ears but also pretty much everywhere else in the body. I was very frightened at this possibility as you could imagine. He said that he thought it was extremely unlikely as I didn’t show any signs of muscle weakness, but the only way they could be sure was to have a muscle biopsy. At the time I was willing to take the risk and refuse, instead opting for genetic testing to test for Usher Syndrome. I was referred to the genetics team who took a sample of my DNA to try and find the faulty gene causing my condition. When the results came back I was finally relieved to know exactly what I had. It was Usher Syndrome type 3 caused by a mutation in the CLRN1 gene. This gene creates a protein called Clarin 1 which is essential for homeostasis (a scientific word for maintenance) in the retina and hair cells in the cochlear. I have inherited two faulty copies of this gene from my mum and dad who are both carriers of the condition, but don’t have it. This is because it is a recessive gene and you need both copies to be faulty in order to have Usher Syndrome type 3. I also have a brother who doesn’t have the condition, although there is a 2/3 chance he is a carrier. Although it is the rarest of all the Usher Types, turns out my parents share a common ancestor (which we all do somewhere along the line) that had the gene mutation that causes my condition. 

Since finding out I have Usher Syndrome, I have completed my degree with a 1st Class and I’m now doing a PGCE to become a physics teacher in a secondary school. I have got through a few pairs of hearing aids as my hearing has deteriorated throughout the years. I have been back to the eye clinic for a visual field test and have about 30 degrees of vision in my left eye and only 15 in my right. My visual acuity in my left eye is perfect and I don’t need any glasses. However since my right retina detached my right eye acuity is practically useless and I don’t tend to use it at all, in fact it often makes it harder for my left eye! There is one cool thing about my right eye though; I can now see the UV light from black lights due to my plastic lens. I have now been registered as sight impaired and will get a card, which I can show to the bouncers next time I trip down the stairs so they don’t kick me out, even if I was drunk! Looking into the future, I will take it as it comes and I know that my friends and family will be there to support me every step of the way.

P.S. Does anyone else who is partially sighted think that those wet floor signs cause more harm than good?? I have never once slipped on wet floor but have lost count of the amount of times I’ve tripped over them bloody things!

 

Wednesday, 24 June 2015 19:18

Brave or Plain Crackers

My name is Lynne and I have Usher type 2.  

I'm 33 and mum of two boys Oliver 5 and Elliot 3.

I decided to have a party for Elliot's 3rd birthday and a summer party for Oliver as he has an awkward birthday (28th Dec).

The party was to be held in the garden with a bouncy castle (suitable for adults whoop whoop).

Anyhow, I had a brainwave and decided to ask my best friend to share the party with her daughter who has her birthday the day after Elliot.

I'm thinking at the time this is going to be fantastic, I'll have my bestie at the party we'll have a laugh. It was decided that her daughter could invite 5 friends, which got me thinking oh heck I'd better invite friends for Oliver so the party won't be overrun by girls!

It was decided Oliver would invite 4. Elliot doesn't have any friends yet.

I book the bouncy castle,  book the week off to get the gardens and house prepared then all of a sudden GULP!  it hits me what on earth have i got myself into!  Me..............and about 12 kids!  Oh my goodness, how am I ever going to cope?

 I can barely get through the day without knocking or bumping and keeping track of my own kids, let alone anyone else's!

My week off arrives and panic has well and truly kicked in and I am running round like a headless chicken still wondering why oh why have I done this.

The day arrives, my bestie turns up at 12 o'clock as agreed and i find out that we have our wires crossed her invitees are arriving at 1pm not 2pm like i thought.  (Bleeeeeeeeep) I'm not ready!!!!!  

As bad as this might sound right now I was so relieved that Oliver only had 1 friend coming to the party in the end.  So it was approximately 9 children and 12 adults.

I start running round again getting everything ready along side Julie and people start to arrive.

I'm ok, I'm ok I can do this, just watch where they all go and try to keep track, just take your time (I'm saying all this in my head) it became a waste of time talking to myself, it was a simple case of let's hope I live through this, manage to stay upright and not make a complete plonker of myself! 

The main incidents that got to me were:-

1. I walked into the Gazebo leg even though i erected the darn thing. This was in front of all the guests it was joked that I'd been drinking.  (You do what you gotta do and go with the flow)

2. The guest mums were all asking about the food and i could hear someone asking me questioms but couldn't locate who it was and I didn't have anyone with me at the time to repeat or point out who has said it.    Anyway I realised the woman was just in front of me to the right and I'd been answering the questions to someone else.  Felt like a right boob.

3. The last thing that got to me is looking at photographs I took a selfie of me and the boys and my eyes are looking the wrong way even though I'm looking at the camera I'm looking at the button to take the pic,  i never realised how obvious it is until i saw it in the photo.  The same in a photo of me and the bestie Julie even though she was taking the picture you can tell I can't see. 

Anyhow the party was a huge success everyone loved it and had a great time as did I but I suffered terribly with stress and anxiety throughout the whole thing. I was completely pooped at the end, yet I couldn't sleep that night because i was still stressed even though it was all over and done with.

I know I could have told the guests that weren't aware of my condition what was going on or attempted to use my long cane but why does everything have to evolve around it.

I just didn't want to stick out and for everyone to have fun and be happy.  :)

 


  

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