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• rp
• Posted: 2008-02-07 22:14:06 By neira l
• hello again my email is knd69n5@charter.net
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• rp
• Posted: 2008-02-07 22:12:31 By neira l
• hi my name is neira i'm 26 yrs old and i have rp.i will like to meet someone that has the same thing and ask question
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• rp
• Posted: 2008-02-07 22:12:27 By neira l
• hi my name is neira i'm 26 yrs old and i have rp.i will like to meet someone that has the same thing and ask question
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• i would like to try a clinical trial
• Posted: 2008-02-07 11:19:25 By Hilary P
• if you would know i would not mind having tests or an experiment done on me, since I have Usher Syndrome. I want to be one of the brave ones who is willing to take a chance on something like this if it could save my vision and hearing.
  Thank you once again,
  Hilary Perryman
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• Me having usher syndrome
• Posted: 2008-02-07 11:15:19 By Hilary P
• Hi. I would like to introduce myself. My name is Hilary and I am 19 years old and I currently go to Northwest Louisiana Technical College. I am majoring in Medical Office Assistant and Office Systems. I just found out in May of last yeat that I had Usher Syndrome after my sister found out she had Retinitis Pigmentosa. She wanted me to get checked to see if i had it and i did. then after 6 months went by i ended up getting Macular Adema which causes swelling in the pupil of my eyes. I was terrified when i found that out. they put vegetable dye in my viens and i got put on diamox which i think made the swelling worse. I was just wondering if anybody knows if there is any other treatment since i am from a small town in Louisiana. If there is I would really like to know. I do not want to lose my eyesight or my hearing for that matter.
  
  Thank you for taking your time and reading this.
  Hilary Perryman
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• Hello!
• Posted: 2008-02-05 13:57:31 By Marion F
• I read your email and just wanted to say my mother is deaf and blind she is now 61 years old. She gets around well her and my father just went on the Deaf cruise with 3,800 deaf people. My father helps her, but she stays positive and we all do our share. She does get down at times, but we are there to encourage. You need the right supports and you can do it. I don't know if you believe in the Lord, but if you do it say you can do all things through Christ that strengthens you. God Bless and I pray for strength for you.
  
  Kandy Reyes
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• An article from Scientific American
• Posted: 2008-02-03 12:38:21 By Mani I
• Hello:
  What do you guys think of this?
  
  http://www.sciam.com/article/id/stem-cell-eye-repair/SID/mail
  
  Thanks,
  mani
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• Latest update 11yr old suspected Usher
• Posted: 2008-02-02 12:49:50 By wendy f
• Hi everyone,
  only a week after my last post on here (my child had just been seen in the local VI clinic) we got to see the Eye consultant at Addenbrookes hospital Cambridge. They checked her visual field and acuity, both had got worse. Within 10mins of being in the building the doc registered her 'severely sight impaired' (blind) and called the professionals at our local clinic to say they must start rehabilitation urgently. Her field loss is described a 'extensive', her acuity is 6/18 and she needs print enlarging. She'll start learning Braile as of next week. She has had the first Mobility training session, we did sighted guide, symbol cane, trailing and then she was measured for her long cane. The 'deafblind' long cane has been ordered and the VI teacher will teach her how to use it in two weeks time (teacher is away ski-ing)
  My daughter loved the long cane. She is keen to get her own. We both found the sighted guide stuff very useful. I got her a lovely book about a young girl that gets a cane:'a cane in her hand'.
  She's being seen for Low Vison aids on 21st Feb.
  I've joined RNIB, DeafBlind UK and Sense and got really good info from all of them. I feel better now that the VI service are helping her learn to get about again, she'll regain confidence and be fine I'm sure.
  She'll see the geneticist in a couple of months to confirm Usher, they are suspected a muted gene as she has NO pigmentaion and it has worsened very, very rapidly. They want to get social/educational side of things sorted first then tackle the genetics.
  This site had been fabulous, it gave me confidence to chase the doctors for an appointment, to push the VI service for mobility training, remain positive about the diagnosis and so pass positive vibes only on to my lovely daughter. I'm so proud of her, she's taking it all in her stride and is so excited at the prospect of a lap top and cctv for school!
  Wendy in the UK
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• Usher Syndrome and Scared
• Posted: 2008-01-31 22:36:40 By Cristy W
• I am a 33 year old woman who has wore 2 hearing aids since 4 years old. After being sick with high fever, I was diagnosed with hearing loss and it was believed to be from nerve damage. My hearing loss has stayed the same with no chages over the years. I have lead a very normal life and graduated with honors with my bachelors in business with a concentration in Accounting. Not saying it was easy, I have always had to work harder with my disabilty. In my mid 20's I was told I had RP, the doctor really didn't elaborate on it, other than say adapt to it since I have trouble seeing in the dark. In December 2007, I went to see an optomatrist for catracts and although they were mild took one off and a week later took the other off. Before the cataract surgery, I was seeing 20/40 with glasses and that was the best it could be until the catarcts were removed. Now 5 weeks after surgery, I see at 20/30, I was on cloud nine. A couple of weeks ago, I went for an after cataract surgery checkup and was told I probably had Usher's Syndrome. He gave me a one page print out and I read that and it upset me. I got online and read how awlful it was. I have been very depressed. I currently work a federal government job and have alot of promising promotions ahead. Now I am scared becuase I am not sure what to expect. Am I going to be deaf and blind. I am scared. What should I do? Is there some expert doctor I should go to? Should I just give up on trying me normal and lead the American dream....I guess I am rambling, I guess I am nervous about what happens if I a single mother can't work and support my child. Does anyone else have this anxiety? I guess I am on here looking for someone to relate too.
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• Usher Syndrome and Scared
• Posted: 2008-01-31 22:36:36 By Cristy W
• I am a 33 year old woman who has wore 2 hearing aids since 4 years old. After being sick with high fever, I was diagnosed with hearing loss and it was believed to be from nerve damage. My hearing loss has stayed the same with no chages over the years. I have lead a very normal life and graduated with honors with my bachelors in business with a concentration in Accounting. Not saying it was easy, I have always had to work harder with my disabilty. In my mid 20's I was told I had RP, the doctor really didn't elaborate on it, other than say adapt to it since I have trouble seeing in the dark. In December 2007, I went to see an optomatrist for catracts and although they were mild took one off and a week later took the other off. Before the cataract surgery, I was seeing 20/40 with glasses and that was the best it could be until the catarcts were removed. Now 5 weeks after surgery, I see at 20/30, I was on cloud nine. A couple of weeks ago, I went for an after cataract surgery checkup and was told I probably had Usher's Syndrome. He gave me a one page print out and I read that and it upset me. I got online and read how awlful it was. I have been very depressed. I currently work a federal government job and have alot of promising promotions ahead. Now I am scared becuase I am not sure what to expect. Am I going to be deaf and blind. I am scared. What should I do? Is there some expert doctor I should go to? Should I just give up on trying me normal and lead the American dream....I guess I am rambling, I guess I am nervous about what happens if I a single mother can't work and support my child. Does anyone else have this anxiety? I guess I am on here looking for someone to relate too.
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• Got a promotion!!!
• Posted: 2008-01-30 13:51:29 By andrew b
• Just got promoted to a sales management position at my company. I'm very excited and grateful that they considered me above so many other qualified candidates. Having ushers, I'm so blessed to be working, and moreso to be doing a pretty good job at it. I have 6 employees, maybe 5 if I fire one of them who has poor performance reviews, so it's not a large team. I'm excited about coaching and working on skills with the reps on my team. I think that it's going to be such an interesting and challenging year. Letting go of the fact that others need to grow and the opportunity to succeed or fail on their own will probably be the hardest part of the job, but I await it all the same. Not bragging or anything, just wanted to let my extended Ushers family know what was going on with me. Chat with y'all soon.
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• Usher
• Posted: 2008-01-26 10:05:54 By Irene K
• I am new to this board. My son has recently been diagnosed with Usher. He is 20. I share the frustration of everyone on this site and urge everyone to continue to support stem cell research and to tell everyone you know about it. A researcher at Harvard said to me about my son: "Treatment is some years away, but time is on your side." I found that to be both realistic and hopeful. We MUST have hope.
  
  My son was born with a moderate hearing loss that became more severe when he hit puberty. But it has been stable since then--10 years. He has the typical "donut" vision of RP, but still has good central vision and gets around very well. We don't know what the future will bring, except that it can only get worse.
  
  Except that there is hope, people! The coming election is important. No matter where you stand on abortion, no sensible person, in my view, can equate 150 cells in a Petri dish to my son, or to any of you. We must fight for this miraculous research to be funded and to continue aggressively.
  
  I wish all of you the best. Make the best with what you have, keep your sense of humor, be vocal about our cause, reach out when you need it, and hope!
  
  Irene K
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• Possible Usher (long post)
• Posted: 2008-01-24 03:35:47 By ashley w
• Hi,
  I would like to share my experience with you - but please ignore if you dont like long posts.
  
  I'm male, 47 , a computer programmer/analyst in Melbourne, Australia.
  First my hearing:
  I have a bilateral sensorineural hearing loss, moderate in the low frequencies to severe (80db or worse) in the highs. I was diagnosed when i was 3 or 4, and have worn hearing aids ever since. It has really only been in the last 2 years that I have hearing aids that I am really happy about (Oticon Tego pros - BTE power model). they are great for music, noisy situations like bars restaurants etc.
  By the way, someone else posted here that hearing aids in Australia were free. They are only free if you are under 18, or on a pension (ie. retired or disability pension). SO I have to pay for my hearing aids - and the models that I have are not cheap....but thats okay with me.....
  
  Now, as for my vision:
  I have worn glasses for farsightedness (ie. for reading) since the age of 22 (actually about 6 months after starting work in IT, I realised that my headaches were not just because the work was a bit boring...). Now I have sat down and thought about it this afternoon, my night blindedness probably started around the same time - at least I cant remember any problems in the dark before then. I also have had, for the past 15 years at least, a sensitivity to light overhead, so much so that I have worn a visor at work for the past 15 years to shade the light from overhead...I did put this down to my poorer eyesight. After all, one does see those guys in the press offices in the movies with shades over their eyes...I also have noticed over the past 15 years especially that sometimes objects slip out of my vision, but if I move my eyes a little over then they come back into vision....I've played with this a bit this afternoon and it looks a bit like a doughnut field of vision, so as I move a pen from the extreme left across, I can see it moving across, until it disappears for a while, and then comes back into view (across the centre of my vision) and then disappears again for a little while.....
  
  then, last weekend, my (new) optometrist informed me that I had retinitis pigmentosa, based on pictures of my eyes that she had taken (and showed me) and also a test of my peripheral vision (which was pretty poor - more or less matched my impression above). In fact she informed me that legally I shouldnt really be driving anymore. So, now I've been referred to the eye hospital here in Melbourne - which is free, but on the other hand will take several months to do the next round of tests , basically the ERG.
  
  So that was one thing...then on Monday I was checking about RP on the internet, and Usher syndrome came up. The descriptions of the hearing loss and the RP (for type 2 Usher) looks like it almost perfectly matches what I have.....
  
  So my question for everyone is: should I wait for the 'official' confirmation of Usher - presumably after the ERG there will be some sort of genetic test to confirm...or talk to the other members of my family now about the genetic implications now? I should have mentioned that I have 2 sisters and 1 brother in my family, so the odds that have been mentioned about the chances of being an Usher carrier or sufferer would presumably fit perfectly in my family.
  I have already explained to my wife about RP, and Ushers, and the very small possibility of the RP getting worse - though I feel now that if I'm careful it may be okay. For example, I'm already wearing a cap all the time now when I'm outside - and I feel as though thats already making a difference in terms of my eyes being ready to jump into a reading task when I come inside. I'll also get some wrap around sunglasses to put over my glasses - the sun down here in Melbourne is possibly the strongest in the world - I know, i've lived in quite a few countries.
  
  Actaully, now I'm thinking about it, I think I'll let them know anyway - with the proviso that it may not be Ushers after all (small chance of that?).
  
  Its not so bad, really, I dont think its as extreme as some of the cases that I've been reading about on this forum. I still have almost perfect vision in front (with glasses) - so I can get a lot of enjoyment out of my home theatre. And of course with the hearing aids as they are now, I'm pretty sure (after talking about it with my friends about how they hear the sounds) that I'm getting pretty close to a 'normal' sort of hearing experience. ..
  
  The last thing that comes to mind - if I do get it confirmed that I have Usher's - apart from a little sadness at the thought that I never really knew that I had this for the first 47 years of my life - is the possibility of gene therapy to at least alleviate the RP - and , in theory, I suppose, the hearing loss as well. Does anybody take that possibility seriously or is it a bit airy-fairy? Before I thought that I would be HOH for ever - but even a little hope of changing that is somewhat overwhelming to me at the moment.
  
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• US or not?
• Posted: 2008-01-22 15:49:34 By Cathy H
• I don't get. A few years ago a genetic test done on my daughter said she has Usher. Last week a doctor who examined her eyesight said the responses on her retina are too good, she can't have Usher. She is 22.
  How can a doctor make such a blank statement?
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• New diagnosis 'likely to be Usher syndrome'
• Posted: 2008-01-17 12:56:33 By wendy f
• Hi,
  Well its been a hard few weeks here in the UK. The eye doc rang me on 17th Dec to say my daughter has all the signs of RP without the Pigmentation. Darren gave advice on the RP message board before Xmas. We had to then 'sit it out' over the Xmas period and wait for everyone to start back to work...
  In the meantime I discovered my daughter is having serious problems getting around in the dark, in busy places, in using stairs etc, and has what I would describe as pretty severe tunnel vision.
  So, this week we've been to the VI assessment clinic. Present was our Peadiatrician, an Optomatrist and two VI teachers.
  They told me my daughter probably has Usher Syndrome (I'm not shocked, I had my suspicions)They said her ERG 'showed extensive photoreceptor abnormality' Her visual acuity however is very good at 6/6 both eyes. She has no clour blindness and can read at font N12
  They offered 'sightd guide' training but that was about it. They didn't know anything about Usher really and said they haven't had one before!
  I remembered when I got home to ask what degree of loss she has with the tunnel vision and I'm waiting for them to call me with that info.
  Educationally we have a school with a VI unit but no HI experience and also a school with a HI unit but no VI experience! My daughter prefers the light in the school with the VI unit, she says the HI unit school is too dark.
  They are keen for her to go to the HI unit school but I'm concerned about her safety as mobility is a problem already for her. Also the school has alot of 'pillars' on the day we visited she walked into two!!
  She was referred to Addenbrookes to a Miss Allen, I rang to chase the appointment and was told Miss Allen says its so rare that she is referring us straight to the geneticist and won't see my child herself! I kicked up a fuss and now she has agreed to see us next week, 23rd. They will do visual field then eye drops for Miss Allen to look in her eyes.
  Any tips appreciated. I'm not impressed with how blaze they are about it. I don't feel any of them know enough about the effect Usher has on a person life...
  I've posted on FFB RP message board and on parents of children with RP, Cynthia from there suggested I post on here too.. Apologies to those of you that have read all this before! I'm just covering every angle to get as much info as possible as you guys know 100 times more than the docs here in the UK!!
  I've contacted Sense, and Usher UK, a Sence lady will meet eith me tomorrow re education.
  Thanks Wendy
  
  
  
  
  
  
  
  
  
  
  
  
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• Goverment grants for small business with Usher?
• Posted: 2008-01-05 19:59:52 By Mike P
• I am looking for information on where to find government grants to help open a small business. I have Usher type II and wondering if there is program out there that would help some of us out?
  
  Thanks
  Mike
  
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• Hearing Aid batteries
• Posted: 2008-01-01 18:07:34 By Dan G
• Just curious....has anyone found a place online that sells cheap hearing aid batteries? I have always bought mine at the local drugstore trying to pay $.50 or less per battery.
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• Cochlear implant
• Posted: 2007-12-22 13:41:43 By Karen S
• Hello :
  
  I was interested reading the mails and discovered you were talking about cochlear implant. And that that was effective years ago.I would like to know information about that. My husband has Usher 2. Is also recomendable for him and until what age?. I heard about some implants but only are trying till now with some patients. The idea is to mantain as longer as possible his retina.
  
  Thanks for your help.
  
  Karen
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• photopsias study
• Posted: 2007-12-13 13:06:57 By Marisa P
• Dear Usherlisters,
  
  One of my colleagues, Dr. Ava Kiser, and I are trying to find out more about the occurrence of photopsias (flashes of light or “light shows”) among individuals with retinitis pigmentosa. We created a questionnaire that asks about your description of photopsias, possible associations and the impact. I know this topic has been discussed previously on this list, but there is surprisingly little systematic information that has been published in the literature on photopsias in RP. We are now hoping that many of you will be able to complete the questionnaire so we can learn more about this phenomenon and disseminate the information to others in the eye care and research communities.
  We created a web-based questionnaire for the purpose of collecting this information, and would very much appreciate it if many of you filled out this questionnaire, even if your experience with photopsias is very limited or if you have not experienced them. The questionnaire is anonymous, and will not ask for identifiable information other than a few general questions about your age group, gender, and race. The proposal to administer this questionnaire through a website has been reviewed by the Institutional Review Board for Human Subjects Research of the Johns Hopkins University School of Medicine, and they have given us permission to conduct this research without obtaining written informed consent from the respondents, since that would in fact void the anonymity of the questionnaire.
  We expect that it will take you 20-30 minutes to complete the questionnaire, depending on your reading speed or if you are using a magnifier, screen reader or other software.
  
  Please visit the questionnaire at:
  http://162.129.125.253/lvc/photopsias/index.htm
  
  We certainly welcome comments, and you may e-mail us separately so your questionnaire responses will not be identified by comments that may reveal your identity. Ava Kiser may be contacted at: abittne1@jhmi.edu
  Finally, we know that many of you have friends and relatives who are RP patients, but who may not subscribe to this list, and we would appreciate it if you could forward this e-mail to them. Thanks in advance for your help!
  
  Very best regards,
  
  Gislin Dagnelie
  Associate Professor of Ophthalmology
  Johns Hopkins University School of Medicine
  Delete Reply Forward Spam Move...
  Previous | Next | Back to Messages
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• walking cane/stick
• Posted: 2007-12-10 17:44:25 By Eddie L
• anyone know a good online site to order a breakaway walking cane.. mine just broke!
  thanks
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• Educational Videos on Usher Syndrome
• Posted: 2007-11-30 22:04:12 By Marisa P
• I just finished watching two documentaries on Usher Syndrome that would be good for those just diagnosed with it or for the parents of children with Usher. The two DVS are $32. and if anyone would like to see them and money is an obstacle, I'd be glad to loan my copy:
  1. Silence with a Touch: Living with Usher Syndrome
  2. Usher Syndrome: Personal and Professional Perspectives
  
  http://www.tc.columbia.edu/nystap/detail.asp?id=dvd
  
  Dr. William Kimberling does a wonderful job defining Usher in plain language and explaining what a person who has it and/or the parents of children who have it should do. There are a number of young people interviewed and it's a very uplifting experience. As most of us say on this message board, there is very little that those of us with Usher can't do.
  
  I don't know if I should feel fortunate or what but I have to say that, in some ways, I don't feel like I fit in with many who have Usher because I never learned to sign because I didn't need to and I have yet to learn Braille. So, if I were to come in contact with some of these individuals, it would be like being in a foreign land where a different language is spoken.
  
  Marisa
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• article on Usher
• Posted: 2007-11-19 10:42:45 By Marisa P
• Hello everyone,
  
  I had heard of this before, but I didn't know if you guys had. It is an article about research that shows that a protein tied to Usher Syndrome may be hearing's "Missing Link":
  
  http://www.eurekalert.org/pub_releases/2006-06/niod-ptt062106.php
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• New Ushers site
• Posted: 2007-11-16 14:18:05 By Monika S
• Hi everyone,
  
  I just found out that parents of a boy who was diagnosed with Ushers I started a new foundation. This family's son was diagnosed at the same time as my daughter. You can find it at http://www.hearseehope.com/. It looks like they are really active in fund raising and funding research projects. It's nice seeing a organization that is dedicated just to our specific syndrome.
  
  Monika
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• where to find trial data?
• Posted: 2007-11-11 13:48:11 By Drew C
• Hello everyone,
  
  First time posting on this website (well I am sure it's the first time. Can't remember lol).
  
  Been a reader here for a long time though! Also I am a 26 year old male and have Ushers Type 2, though I don't require a cane yet. Though things are not as easy as they once were. :(
  
  I have two questions which am I hoping someone might be able help me with.
  
  What websites can I check to read up on the latest results and data from the various trials ongoing? I am quite interested in the LCA trials they've commenced in May this year, as that line of research seems to hold the best chance of restoring vision I feel.
  
  Also I was hoping someone might know of any RP events or get-togethers in NSW, Australia? Seems all the activites are based in the UK or USA!
  
  I also wrote a kids book, as something to keep me focused in the meantime, but that can only keep me busy to a point. I would like to meet others with similar conditions if there is anything based here where I live. So if someone is from Oz like myself I'd love to hear from ya.
  
  Also if anyone is interested, I've included my website which shows a bit about my book.
  
  www.drewjcormack.com
  
  Anyway hope everyone is well.
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• Book: My Maggie
• Posted: 2007-11-09 12:26:02 By Luis M
• 
  Hi Everyone,
  
  Just wanted to let you know about a new book called "My Maggie". It was written by a sports anchorman in Chicago, detailing his life/relationship with the love of his life/wife named Maggie. She had Ushers 2 (I think)...she was a great lady, met her in 2001. She passed away in 2002, succumbing to ovarian cancer.
  
  Here is the website:
  
  www.mymaggie.com
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• Simple Question .
• Posted: 2007-11-05 22:55:45 By Eddie L
• i am 43 yrs old and living with ushers.. I started wearing OTE aids when i was 4 and found out about RP when i was 15 yrs old. In 1992 was classified legally blind. I continue to work till Dec. 2005. Retired now . Question i have is i being walking with a cane and my wife helps me move in crowds, stores, etc. How do you deal with ppl staring? they see me wearing glasses and maybe they think its all a put on. Also, do we have to card some kind of ID stating that we need the cane/help etc? Is there an organziation like AARP that gives the handicapped/blind etc discounts on things since most are living on a fixed income? I figure out how to tell the denominationof coins, but how can i make it easier to make out the bills?
  
  Thanks
  
  Eddie
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• Cycling for Ushers
• Posted: 2007-11-05 12:17:02 By Pat B
• Hi Folks,
  
  I posted this on an older thread.
  
  I'm from Ireland, I'm 29 years old, I have Ushers Type II. I have recently began to develop a passion for cycling. I have heard it all over the past 10 years with regards to sports etc. on "You'll get hurt etc."
  
  I love sports. As much as I want to go back to the sports I used to play before I had to stop them or try new sports. I know in my own heart that I can't play team sports anymore.
  
  I run, swim, do weight training and play golf, with someone who watches my ball!! :o) But there are so many other sports I would love to participate in but I just can't.
  
  Cycling is my latest effort. Some of my friends are doing it and I figured, why not? I love a challenge. I've thought about it for some time now, weighing up the pros and cons and I decided to get a lend of a bike and try it out. I absolutely love it. I want to aim for something bigger in a year or so, a duathlon or triathlon!! :o)
  
  But, what I want to know is an someone who has Ushers, how do you find cycling on roads? Apart from the peripheral vision problems, i.e. can't see another cyclist beside you. Are there any tips, tricks or advice you can give?
  
  Many thanks.
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• Usher type 1
• Posted: 2007-11-05 11:58:46 By bridget k
• Hi my name is Bridget, my 2 daughters have been recently diagnosed with Usher type 1. My oldest is 2 1/2 and my youngest just turned 1. I was just wondering if anyone out there can give me any more information about it. I've pretty much read everything I could find online about it, but I'd rather have someone who has Usher Syndrome just tell me what its like to live with it. They both have cochlear implants (my youngest is actually getting her surgery for it on friday) and are very good at signing as well. Their vision has not been affected yet, but we have eye exams schedualed every six months to check up on it. I just want to know what to expect as they get older. Any info. would be greatly appreciated, the best way to get in touch is through my email: bridgetkamp@verizon.net. Thank you so much!!!!!
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• Dryness/Headaches
• Posted: 2007-11-01 13:13:57 By Luis M
• 
  Hello Folks,
  
  I know there was a discussion on this in the past and I am curious whether anything has changed since then. Within the last year and half, I have been having the most awful headaches, exacerbated when my eyes are dry. In addition, my eyes feel as though there are upper vessels that are about to explode- just a weird sensation to explain. I have thought of taking aspirin but I wonder whether that will make the situation worse. I know, I know...I should see an ophthalmologist and a retinal specialist very soon. Also, recently, even walking in cloudy/overcast weather, I have to wear sunglasses...the glare has definitely become my enemy, becoming super sensitive. Anyway, any hint of glare that I experience, it feels as though I am shocked (like the scene from The Raiders of the Lost Ark, when the Nazi opened the ark and the forces were shooting ray(s) into their eyes)..then the start of the vicious cycle- the dryness, then massive headaches..
  
  
  I guess I am wondering whether anyone else has experienced this (or at least a variation of it)...
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• 15 year old
• Posted: 2007-10-28 02:12:41 By Catherine R
• My daughter has just been diagnosed with Ushers type one I guess cause she was born profoundly Deaf.....she is 15 years old and really struggling with this - she is now getting headaches in class, trouble with other students who think she is "clumsy" and other kids in her school (a Deaf residential school)that are being really cruel ie signing rude things to her, turning the lights off when she is in the room which effectively totally blinds her....anyone have any ideas of how I can get some support for her, preferably her own age group....she is getting very depressed...and my heart is breaking....help
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