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• Night Blindness
• Posted: 2011-06-22 23:10:10 By Greg A
• We have a 7 year old son who was born deaf. He did walk late, but we have chosen NOT to have genetic testing for Usher performed. So far, his retina look fine (no bone spicules). If he does have Usher 1, would we be noticing issues with night vision by now - we haven't noticed anything yet....
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• Vision Through Words
• Posted: 2011-05-19 14:28:49 By Stella D
• Vision Through Words is a new blog that posts poetry and short essays written by visually impaired people, but to be read by all. Please go to www.visionthroughwords.com to find out more.
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• Dominant/Recessive?
• Posted: 2011-03-28 17:10:22 By David W
• I hav Usher's and I am wondering is it Dominant or Recessive?
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• Hey folks
• Posted: 2010-07-12 09:59:05 By Andrew B
• Hey gang, I haven't posted on here in a while, and I see light activity. Just wanted to say hey from Atlanta!
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• RP Social
• Posted: 2010-05-05 21:44:47 By Maria P
• Hello everyone,
  
  Here is the info for the 2010 RP Social open to all with retinal degeneration or other blindness as well as Usher. For info go to: www.rpsocial2010.com It is a great way to meet others who are dealing with Retinal disorders or Usher. I am looking forward to going to my first social.
  Hope to see you tehre!
  Marisa
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• Speaker
• Posted: 2009-08-17 10:22:11 By Milton D
• HI, I am wondering if there is someone in Southern Maine who has RP or Usher Syndrome who would be interested in participating in a community education program to talk about what it is and what is the experience of having RP or Usher Syndrome.
  Contact me at miltonsdavis@gmail.com
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• CHATROOM
• Posted: 2009-07-12 23:06:50 By Maria P
• Hello everyone,
  I am posting this info here in case any of you would like to join us in the RP chat. There are several of us with Usher as well. Some of the participants post here and in the RPLIST.
  
  This is from a post sent to RPList long ago:
  click on
  www.ratzie.ca/files/mIRC-RP.exe
  for a low vision friendly chat program.
  Once you have downloaded and installed the
  program, you are ready to run the program and
  start chatting. It will take you directly to the
  #RPSupport chatroom.
  The first time you land in the chatroom, you'll
  come in as "RPer", and will need to change
  that to a new nickname of your choice. You
  can use anything you want within reason and
  in consideration of avoiding unnecessary offense
  to others. To change your nickname, type
  "/nick NewNick" (without the quotes) where
  NewNick is the name you choose (and make
  sure you have the / in there).
  
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• New diagnosis
• Posted: 2009-06-08 12:44:30 By Scott H
• Hello,
  I was wondering if anyone else has had a similar experience. Up until about a week ago, I always thought I had RP. I became legally blind almost four years ago in my early 30s. I have known about my eye disease since age 9. Last fall, my ears started ringing and my wife noticed I wasn't hearing everything the way I used to. Last week, I saw an ENT at the U of MN Hospital who specializes in working with Usher Syndrome. After checking out my audiology results and some exam and other tests, he said I have a type of Ushers. He didn't seem overly concerned about it and didn't seem to think I should be either. He suggested that I get my hearing checked annually to check progression.
  Has anyone else out there had the vision loss before the hearing loss? How bad has the hearing loss been? I am a little bit in shock here. I thought I understood my condition and now have to learn a new disease.
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• Braille
• Posted: 2009-03-26 10:00:56 By Brian O
• Hi All,
  I just read an article stating that fewer than 10 pct. of blind Americans read Braille (link: http://news.yahoo.com/s/ap/20090326/ap_on_re_us/fea_lifestyles_braille_literacy)
  
  My 5 year old son Dylan has Usher Type 2a with mod-severe hearing loss since birth and has worn hearing aids with great success since 8 weeks old attending an auditory-oral program through the Clarke school until this year. He is currently in mainstream kindergarten doing well. His vision has not been impaired yet.
  
  What are people's thoughts on getting him braille reading training or your own experiences in this area? Is technology far enough along to remove the need for braille? The article suggests otherwise.
  
  Thanks for your thoughts,
  Brian
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• Driving Question
• Posted: 2009-03-06 15:35:58 By Brooke H
• Hi all-
  
  It's been a very long time since I posted. I have a quick question for anyone who would like to reply. Last week after an annual eye exam, it was reccomented that I no longer drive. As the mom of two little girls, my husband and I have made the decision for the saftey of us, and others, that we would make this transition. I just wanted to see how others have handled this transition? We've got a good game plan for now, but I was curious as to how you all handle your week and weekends? I still work, and the kiddos are in daycare. I have Ushers type II for those that are wondering. Thanks!
  
  Brooke
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• Congratulations to Scott MacIntyre!
• Posted: 2009-03-05 11:51:42 By Kristine A
• Congratulations to Scott MacIntyre! His dynamic performance on Tuesday night secured him a place in the Top 12 in American Idol!
  
  Thank you to everyone who voted for Scott. Be sure to tune in again next Tuesday at 8:00 p.m. EST and cast your vote for Scott as he performs in the next round. With FFB’s support, Scott MacIntyre is destined to be the next American Idol!
  
  Millions dream of making it to the final rounds of American Idol but for Scott MacIntyre, the dream has become reality. Born with severe vision loss from Leber congenital amaurosis (LCA), Scott is an incredibly gifted musical performer who has made it to the Top 12 on American Idol. With his remarkable talent, Scott is bound to make it far in the competition, and we need you to support him as he shoots his way to the top!
  
  An Arizona State University graduate, a Marshall scholar, and a Fulbright scholar, Scott learned to play the piano at the age of three. His piano professor, Walter Cosand, said, "He's always been able to do what everyone else could do and many things no one else could do. A lot of things he does are very remarkable, even for someone without a disability."
  
  Scott also has a sister, Katelyn, who has lost her vision to LCA. With their brother Todd, the three siblings have made a splash performing as the MacIntyre Family Singers. Scott even shared his talents with the FFB family when he performed at the opening luncheon of the 1998 VISIONS Conference in Chicago.
  
  Simon, Paula, Randy and Kara have brought him this far; now it’s up to us to make Scott MacIntyre the next American Idol! Scott will be performing live on Tuesday, March 10, as one of the Top 12 contestants to continue to compete. Voting is free, so be sure to vote for Scott!
  
  Stay tuned to the Foundation Fighting Blindness Web site for more information about Scott’s progress and how your votes can help him reach the top and raise awareness of retinal degenerative diseases across the country.
  
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• cochlear implant
• Posted: 2009-02-28 22:30:00 By Nicole E
• Hi everyone,
  
  I am a mom of two little kids and about 12 degrees of vision loss and profoundly to severe hearing loss. Hearing aids just don't work for me and my eyesight is deteriating ever so fast.
  
  I went to meet with a dr about getting cochlear implants, but I am sooooo scared. I guess going from hard of hearing to deaf, even though, I should be able to hear better, scares me.. I also am thinking of doing both at the same time, therefore I will be completely deaf for a month andhow will I communicate with my kids. Yes I can talk and they can hear. But they can't write and talk to me and tell me what htey want and what they need..
  
  I am really scared!! Can anybody give me advice....
  
  Thanks, Nicole
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• Mama and Nana
• Posted: 2009-02-17 12:28:08 By Sheila L
• Hi everyone! I am new here on this blog. My name is Sheila. I have Usher's Syndrome 2. I am mother to 6 and grandmother to 12. All of my children are grown except for one girl who is now 15. I use a Cochlear Implant and a Seeing Eye Dog. I used to teach but now am early-retired and writing full time. I have advocating for the Deaf-blind for years. I am quite the amatuer but I do like helping out when I can. I read a post from Carol about her new frustrations as a deaf-blind Mom. First Carol, the feeding will get easier, but what I did was, hold the babys chin in my left hand and guided the spoon the the mouth with my right hand. As far as losing her when she is crawling around, I set limits.. I used baby gates and other things to restrict the baby to an area what would be easy for me to find them. I have so much to share with you Carol. Please feel free to email me privately as well... at ShasQuerida@aol.com. Any of you may email me, I look forward to getting to know some new people and make some friends.
  Sheila
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• question and experiences
• Posted: 2009-02-12 00:22:28 By LoRena P
• Do you know who has field expander glasses or both field expander glasses and cochlear implant at same time? I have some problems and had experienced about issues. Field expander glasses is like help you see wide more but one hole part special field expander in glasses on one right side lenses and other normal lenses is on left side. For example if you see computer on regular stable glasses but bed is next to computer desk but if you use field expander glasses with hole in it and you will see both computer and bed at same time. Even you can see far away with new feild expander glasses but with stable glasses you won't see far away to see many things but with new field expander you can see many tiny people in different distances and everywhere but like if you see 10 people at one time in one area but without it you only see one or two person closer to you. i had hard time to adjustment and eyes were battle using right or left side but when get on and sometimes my eyes want either right or left side to be battle but sometimes left eye lense could be cheating because not want to practice enough on right side with feild expander part but if i close my left eye so i can get into right side into field expander piece to see more width and far to help see more better but sometimes if i open my left eye and would get on left eye and not want to use right side eye into field expander and use left side to see normal stable but sometimes it happens when i run in something. But i had other problem when i used right side into expander and i could not see forward beside my leg block like if kid is front of me and not see in front becasue when i was using left eye to make problem in dark not really very dark but when turned light on and see more in expander but will explain to you in alittle bit what my experienced and i learned through month with my these experiences. and i got field expander glasses from my special low vision eye doctor who recommendation me and my rehabilition counselor from few years ago and helen keller was discussed about it before and id id not want to used before and i started using now this time. I contacted eye vision dr few times and asked them questions and they are research something when i told them about my issues and it might take them few weeks to get some answers.
  With my cochlear implant it was different becuase sounds directly with new glasses and it was hard not see lip mouth or can not figure out which or who children or people were talking with new field expander glasses even confused which or where sound enviormentals come from since i see big more wideth with new glasses but i was not used to sounds with new feild expander glasses and it was kind of confused,distorted and feel different also. But without field expander glasses and i was used to hear normal and closer near sounds enviormentals and can tell which or where it comes from to know but with new field expander glasses is become very difficult and different.
  when wear new glasses i feel more anxious, shy and nervous and feel funny becuase people see me in differnet glasses looking becuase on right side it has black round with small lenses in hole in right lenses with left side regular stable full size lenses. But no one people did not make fun of me but i was scared at first but at home i was used to it few times then at work we showed and taught kids and adults what glasses was look like and i was scared try on and they had my children try on to see what it was about and explanation to them then they want me to try on it and i was shy try but after children tried on and they want me to try on and they like see me on with it. Then later i started wear it on own try at work but was feeling funny on different days. I was shy and nervous wear it and it was first time when parents or someone see me wear this glasses that was different this time. I work at childcare daycare part time. But i am tell you about my experiences what happened with these glasses and without glasses. At first i started wear at home on crhstimas break and i tried wear both regular stable and field expander glasses that day and i changed both lenses glasses anytime and when i started used field expander glasses for while then i took it off then wear stable glasses to store because i did not want to wear new glasses field expander glasses in store which were more shy and scared worst so i wear stable regular glasses in store and eyes feel funny and differnet with shine star or shiny thing then when i came home and was busy get ready for christmas eve but i was using regualr stable glasses then i did not know parent was moving woods by dining table and i walked to dining table with bowl of fruit to fill it in then i fell down whole body with boards and boards were slick then i hitted by board and dining table and amost hit whole head and back but it was lucky i did not got hit by device of cochlear implant area on head but it was hurt on jaw mouth and back than head bit did got headache but back did got stractch and bleed alittle bit but jaw inside it felt like bruise so i was furioius what happened. then i quitted wear stable regular glasses and not want to wear stable regular glasses for one month and one week now. but regular stable glasses have magnet orange sun light glasses clip but i did not wear it either becuase i dont want happen again. Then i kept try with field expander glasses more than regular stable glasses. My parents know it was cheating on left side eye when i was walk too fast on new glasses and not use practice enough on field expander glasses at home then daycare figured out and see what happened and they know by now about my new glasses with my experiences. Then happen at work that day i wore field expander i was using left side eye and not on right side side into field expander when helped clean up and i was clean under table to pick up toys and my head forehead hitted by under small children table becuase i was using left eye side not right eye and i did not want to using right side of expander that time and somenone noticed when happened and i was furious myself when happen after got hitted by it.But i did some with right side field expander into with walking or sit down with kids. Then on other day i was outside on big ground when it was warm alittle bit nice outside for combination and i wore both field expander glasses and cochlear implant at same time and then when after school teenage came that day to work and one of teenage was make kids too noise like scream or vaccum sound and that new field expander and cochlear implant got too much pay attnetion directly to teenage and could not ignore that sound and it got my nerves and i took off my feild expander to see if it helped and i did not want to wear it anymore for the day then i was not remember if i was wear cochlear implant or turned volume down to one for while. Then on other day when happened after i was sick but i did not remember to turn volume up or down cochlear implant but did had some problems hearing and not hearing on that day when i wear field expander glasses and one day it happen i was too hurry rush and was not using right eye in field expander and was using left eye side then i was run in shelve cubby to get kleenex for kid and hitted between legs in shelves cubby and hurried back with left side eye. I feel funny becuaes everyone was check and see on me that day when i wore field expander glasses while i have problems with cochlear implant that day when i was not feel good that day. Then later i was embarrassed and not know at lunch time when i was use left side eye glasses to get milk for kid and i was walk with left side eye and picked up milk off table to give but my boss caught me and stand beside me and did not let me go and kids were watch us what was going on and while i held milk gallon in my hands and kids had to wait for milk but they were watch us and my boss told me or come on about eyes and i was on left side eye glasses and not want use right eye into field expander glasses and she was stand beside me and told me and i had to got on right side into field expander then i got off eye move and peek to left side eye to see if she was still there and she was still there not let me go so then i had to get on right side into field expander to use to battle got in field expander piece and when i got in deep into field expander right side then she let me go and i had to walked with right side field expander side to kid to give kid milk which was first time so i was embarrassed and nervous but i knew becuase who i work with co work keep told my boss what is going on with me with new glasses field expander and cochlear implant and i knew my boss came in classroom often more time when i have field expander glasses than before when not had it before and it was often check more time in room then later other day i was sub in different room and it was really different thing that was first time but scared when it was new to everyone to adjusted on that day then when happened when they cleaned up in dark and happened i did not see kid was front of me and not see eye beside left that i have problem and hitted basket on kid accidently and i had trouble with pick up with new glasses in dark but dont know if noticed but i think maybe staff asked my boss about that question and staff had to turned light on when we cleaned up then i see more light in field expandger glasses better than dark and pick more than slow in dark help kid.But boss office was in that room where i was sub that day and she is around alot out and in and has window see through but it has blind but it was open that time. Then later i had problem on table tried use both right or left eyes depend helped kid with work learning project i had problems and one staff noticed i had problem and i felt so funny and shy as nervous. But before that day i decicded took my cochlear implant off not want to wear it at 330 when i did not want to wear glasses of feild expander glasses at 330 with teenage in my room but then when i was sub then after sub and went my regular room i took field expander and cochlear implant off at 330 not want to wear beucase it was more anxious that time. Then next day i did not wnat to wear field expander after had pain and decided ot want wear field expander glasses or stable glasses for while either but i acted funny when i want or not want to wear cochlear implant hear on different days but mostly time i did not want to wear cochlear implant while we had after school teenage it worried my co worker and kept them figure out and wonder why i did not want to wear those things. but when i work full day on fridsys and sub i wear cochear implant and not want to wear and took it off at 330 when teenage arrived and they been watch and tracked if i had or not had cochear implant everyday for one month because they were try to figure out then they figured out by time lines or something and later on other day someone told my boss what was going on then my boss came in and looked me when i was with kids and i think she was wonder or look me becuase i did not wnat to wear cochlear implant and took it off by time schedule and i think she was trying to figure our but someone was guess what might bother me what i dont want to hear. But i am still doing that until i get back to normal but it would keep them worry about both ways. Then happened last week i was outside but did not wear any glasses but did wore cochlear implnat during daytime then when teenage came outside then i took my cochlear implant off and take it in building put it on cubby then i came out and did not see and was nervous and when i got into cutted tree dead wood trunk and hitted by wood trunk with legs almost fell down without any glasses and not hear anything but i knew becuse staff watched when i took it off that made them worried and i was nervous becuase i knew they would told boss what was going on about glasses and cochlear implant at different time schedules when i have or not have it on. but it was more stressed with these so i had trouble decision and trouble choices but i did have emotional when i took cochlear implant off for two hours felt funny but i do enjoy hear and it helps me hear kids and kow where kids are but with teenage more anixous and nerves with really loud like scream or voaccum sound type did not help me at all but it made ear pain but with no allergy shot either but i had trouble choose if i want wear regular stable or new field expander glasses at one time so i had trouble decision or choices by right or wrong but i know i was not supposed to skipping that much with cochlear implant due to adjustment and brain used to hear and everything. And i know my eyes are getting tired becuase not wear or use stable glasses for one month and i was not wear or using new field expander glasses everyday enough but some of days but i stopped wear it two weeks agos and i did not wear any glasses for while. Now i been work at daycare for 4 years this time. But let me tell you what happened past when i quitted and left work at headstart and was had different 4 bosses but one last boss was mean but she was made fun of me use cane and forced me used canes lot times. Then she tricked on last day of school for summer when job coach was left but that was happened that day when cane man trainer came to train with me with cane at job then after cane man trainer left and i fell over kid becuse not used cane right away then on last day it was waited for one week and i got in trouble for not using cane on that day and had to got warning discplinary paper and changed word to job warning instead of first warning and had to sign name and i was upset and scared nervous then later few months decided quitted and left and cane was still at work and boss gave me cane and i did not want cane anymore and i feel like want to threw canes away and i won't take it but i had my cousin with me so to protection me so mean boss can not hurt or make more problmes and i did not took cane and she gave my cousin cane but she did ont tell me where tty and few book were missed so i was really very upset when i turned key in and picked my tty and book but did not find and no one else not help find tty or book i was really pretty angry and upset and boss just handled cane then i threw all canes away and never used canes anymore to very fearful and not trust cane anymore becuaes of she made me lot of fun and got me into trouble for not using canes at that time so it was really very anixous and very nervous as fearful.
  But my mother told me that now my parents,me and everyone and at daycare where i work everyone is learning experiences and many things whenever i have glasses and or cochlear implant. Hope it helps you better this time. Thanks
  
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• Discounts on Makeup Services Help Visually Impaired Women Look Their Best
• Posted: 2008-10-08 15:27:42 By Kristine A
• Patti Pruitt, friend of FFB, made it a mission to identify a beauty spa and paramedic aesthetician in every major city throughout the U.S. to offer discounts on make-up services for their visually impaired clients.
  
  If you are interested in permanent make-up and would like to take advantage of the discounts for visually impaired women, visit www.blindnessga.org/servspons.htm. People who want to recommend spas and aestheticians in their community that may be amenable to discounts for visually impaired clients can send an e-mail to Patti at: patti.pruitt@comcast.net.
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• Single mom with Ushers 2
• Posted: 2008-05-01 07:01:09 By Carol B
• Hi
  I'm a single mom of a 9 month old daughter. I have Usher 2. I'm writing to this forum to see if there are any other women who are in a similar position to me.
  I'm desperately lonely. While family and friends help me out, I just feel so so alone. I guess this has been triggered by the recent deterioration in my sight. Before I had limited tunnel vision and now my vision is misty (best way I can describe it). I guess tiredness and feeling very nervous for my baby doesn't help matters at all. Because of this deterioration, I rarely go outside my door. I keep saying to myself there has to be a better way but I just don't know how. I feel I should now look to getting some mobility training to use a cane, but how do I use a cane while pushing the stroller?
  So, if there are any Usher moms out there, please can you tell me any tips on coping with a young baby. My daughter is great - she endures the spoon going all over her face before it reaches her mouth. She's now crawling, so that is a bit stressful because one minute I see her, and the next I don't.
  Many thanks for taking the time to read this.
  
  
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• career
• Posted: 2008-04-07 14:31:57 By Cynthia C
• Ryan,
  
  Im 40. I have been blind since age 19, i have worked various jobs and even stressful environment, it doesnt bother me, I work as Data entry proof operator at Bank, it bothers me and I dont let the handicap or Ushers get in my way of my life.
  
  Just go with what you feel and try it if you like it. Anyone can do it with their disablities. Dont let someone ever tell you cant do that, prove them wrong that you can try and can do any skills you learn from them.
  
  I love jobs I hate staying home and do nothing that my eyes have worsen and I just limit myself now from fulltime to part time. and Take care of your eyes priority. I just get rest my eyes and then work.
  
  Go for it and Try out any kind of job you want.
  
  Good luck.
  
  Cindy
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• Ushers peer group on Facebook
• Posted: 2008-03-27 04:31:44 By Ryan M
• Just letting y'all know that there is Ushers peer group on Facebook called Intetnational Usher Syndrome Buddies Network so feel free to look it up if your interested :)
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• People being dismissive of your RP experience(s)?
• Posted: 2008-03-26 13:10:13 By Luis M
• 
  Hi You All,
  
  I hope everyone is doing extremely well, taking good care of themselves (and their loved ones), etc..
  
  Just wondering...has anyone on this board ever encountered family members or/and others who do not have RP/Ushers be so dismissive of your feelings associated with the emotional/physical challenges of having this disease?
  
  I did not want to mention this earlier (via posts) but for years (11 years), I harbored resentment towards my parents and siblings (an older sister and brother). None of them have RP and due to that, I feel that they lack the empathy to understand my struggles dealing with this including going back to graduate school for change of careers, giving up driving/independence, trying to find a position that does not entail/driving, making certain that my husband and I lead responsible, productive lives.
  
  I suppose my resentment has a lot to do with the way how my family doesn't acknowledge this, place no significance on Ushers. And furthermore, because it is not directly affecting them, it makes it easier for them to play the 'out of sight, out of mind' game. Resentment appears to be growing as my vision is deteriorating, encouraged (okay, forced) to make adaptive changes.
  
  I want to mention that I absolutely applaud and RESPECT, in complete awe of parents/siblings who show visible and vocal support for those affected with this disorder, not enabling them to walk through this harrowing, unpredicable and very scary journey alone. Knowing that there is such unconditional, loving support can take a person a million miles ahead...that person is extremely/immensely lucky.
  
  I have to confess that because my parents, more especially my mother (my dad is a little more open about this after 11 years- so I can see how I can grow a little closer to him somewhere down the line)- it will be extremely difficult for me to be close to them, will always be that rift. If my parents need help, then absolutely- I would help them as much possible...but in reality, there would be that boundary, emotional distance coming from me. It's funny- my mom once remarked to me a few years ago that I am extremely cold to her, rarely call her, etc...and just recently via her reminder, my behavior towards her has hardly changed- a classic, superficial arms-length type of mother-daughter relationship. To be frank, what did she expect from me after telling me to get over my Ushers, belittling my anxieties/worry about the consequences of having Ushers? She couldn't deal with it- so talking about RP was/is a taboo with her.
  
  I guess I am trying to find a balance in this whole situation...really struggling/trying very hard to overlook these flaws in my family, etc..And trust me, I know I have my flaws too (don't we all)...but when one denies my Ushers/experiences, that person is essentially denying me. It feels like a slap in the face.
  
  So there, I confessed.....
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• ushers an automatic diagnosis from RP?
• Posted: 2008-03-07 09:13:45 By Kindy F
• Hi - My son, 3.5 years, had severe ataxia (balance problems when sitting and walking) since he was about 10 months old. He is very 'ataxic' in his speech (long, slow word sounds) and has been found to have some hearing loss - though the level is unknown. He has a misdiagnosis of CP for quite a while but his muscles are VERY strong and with support he can walk 1 or 2 miles. He is healthy, tolerates almost all food well, is rarely sick, and can tests fairly well on IQ tests though it is a bit difficult because of his slow speech. He has had hearing aids since November (in the 40 - 50 DB range). Wednesday, an eye exam ERS? gave us the result of severe RP. The dr immediately said that this has caused all his other problems and he likely has Usher's of some form. OK, I've spent a year trying to get genetic tests run for the ataxia's (SCA types) with no big luck. He has been tested for Fragile X (negative) and has 46 complete chromosomes (test done at a high level). We live in Denmark and it is difficult to get these genetic tests done. I am DETERMINED now that we will not continue another year with no diagnosis or a partial diagnosis based on only this test. He has had every manner of blood test, urine test, and MRI done. They are all 'normal'. From what I have read of Usher's - it doesn't seem to me that he 'fits' the stereotype - but what do I know? I am very keen to be sure that I do everything possible over the next six months to insure he has a correct diagnosis - and not a partial or mis-diagnosis. Can anyone give me some guiduance here on what/where to look and some thoughts/experiences with a young child with RP and slight hearing loss? Thank you so much! Kacey
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• Career Advice
• Posted: 2008-03-01 21:55:34 By C H
• I'm 26 and was diagnosed with US Type II as a teen. I've never had a job but would really, really like to find something I'm capable of doing but I'm uncertain of my abilities, as I've never put them to the test.
  
  If you have US and have a job can you tell me a little bit about the work you do? Or if you had to give up a job because of US can you tell me what you did and why it became neccessary to give it up?
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• Don't be a DUMB VOTER
• Posted: 2008-02-29 11:00:52 By andrew b
• I've seen a lot of posts where people write about one politician's views on stem cells and espouse that to be a reason to vote for said politician. While a position on stem cells is a good reason to influence a vote, if it's the only reason you vote, then YOU ARE A DUMB VOTER.
  
  I'm not here to say anyone is right or wrong (unless you're a single issue voter), just that you need to weigh risk rewards of a wide variety of positions and come to an educated conclusion about who to vote for. I have a thought and know the position of Huckabee, Obama, Clinton, and McCain on all of these issues. You should too.
  
  Good issues to consider.
  How soon leave Iraq?
  Leave soon, save trillions, but Iraq COULD (maybe not) become another religious state w/ anti-american sentiments with no one to regulate shiia v sunni killings.
  
  Universal Insurance?
  Can the government do a better job insuring everyone then a coordinated plan of regulating/mandating private companies to do it.
  
  Stem Cells?
  Should the government give grants to research around embryonic stem cells?
  
  Environment?
  Do we tax oil more, tax alternative fuel less, what is plan for energy independence (nuclear, wind, solar, etc)?
  
  Illegal Immigration?
  Do we give Amnesty to illegals? Do we make it easier to enter US legally? Do we deport? Do we fine employers of illegals?
  
  Abortion?
  Not really raised as an issue in debates, but as some candidate have a PRO-ABORTION (more than pro-choice) [look at voting records - one candidate voted to allow 14 yr olds to abort w/ no parental involvement]
  
  Education?
  Do you like no child left behind? Should we scrap it? Should we further it?
  
  Economy?
  Should we raise taxes? Should we limit earmarks? Should we penalize companies who hire overseas? What would happen if we penalize companies overseas? Should we bail out homeowners who over-bought?
  
  There are tons of other issues, but these are the big ones I think we should all consider. Read up, be educated, and come to a conclusion.
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• Race to Cure Blindness - Foundation Fighting Blindness
• Posted: 2008-02-29 09:22:23 By Kristine A
• Are you a marathon runner or competitive racer? You can use your racing effort to raise money for the Foundation Fighting Blindness through our Race to Cure Blindness program! To learn more visit www.RaceToCureBlindness.org.
  
  
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• stem cells
• Posted: 2008-02-19 17:34:24 By Irene K
• I just want to point out to everyone here that as we all know, there is great hope in the area of stem cells. Obama and Hillary both support this, but Obama actually co-sponsored the bill. His father-in-law has MS, and he has seen up close what disability does to a person and to a family. McCain says he supports the research, but does not support creating new lines, which is not good enough for me. If you believe that a dot in a Petri dish is a person, I'm not going to bother arguing, but if you see that dot for the miraculous treatments it could bring to millions, then I encourage you to vote for Obama.
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• information
• Posted: 2008-02-19 12:13:36 By Elizabeth S
• Hi, my boyfriend has usher syndrome type 2 and i am looking for information on how i can help and be supportive. I care for him very much and want to know what i can do and what to expect.
  
  thank you
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• Calling all NZers (ALL AGES)
• Posted: 2008-02-15 22:16:52 By Amanda C
• Hey there, am calling all Kiwis to this message. I'm currently designing a web-page made specifically for Usher Syndrome patients in NZ so we can share stories, questions, introduce ourselves and swap info etc... If you have any ideas for me to include on this webpage, let me know. I'll also make it avaliable for others in the world. It was an idea my friend and I had, seeing this is such a small country and it's more possible to maybe even organise regular events to get together in person. How about it? Email me your email address if you want to be on the mailing list and include a little statement about yourself!
  Thanks,
  AJ :)
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• Rubella and Ushers
• Posted: 2008-02-15 12:59:06 By Cristy W
• Daran would probably know this but anyone else tht knows about it can respond to. I received an email from Dr. Kimblering and since my mother had german measles when she was pregnant may not link me to Ushers. He said that Bath cataracts and pigmentary retinopathy are components of the symptoms from Rubella. What do you think of that? I also have the hearing problems. Not sure what to think?
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• Vitamin A
• Posted: 2008-02-14 09:56:38 By Tammy C
• Per my opthamologists of Johns Hopkins he STRONGLY discourages the high intake of vitamin A due to damage to the liver I believe it was it has been about a year since he told me this.
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• ushers syndrome?
• Posted: 2008-02-13 21:27:48 By jennifer c
• My daughter is 2 years old and has low vision(20/150) due to her retinas, we wont know anymore untill they do the ERG in May, but she just had her hearing tested and the found she was severely hearing impaired from the coclius (inner ear). She also has low muscle tone and braces on her ankles, and she doesnt speak or walk yet. My question is...how do I know if she has ushers syndrome? The Dr. in Boston suspects she has retinal pigmentosa or retina degeneration. If this is the case what do I need to tell the doctors to do next? I'm very frustrated and tired of having to ask the doctors to be more pro active. Also when dhould I get her balance checked?
  
  Thanks,
  
  Jenn
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• Vitamin A
• Posted: 2008-02-07 23:09:58 By Cristy W
• Is the over the counter Vitamin A the correct type of vitamin A recommended, I went to the GNC store and bought some a few weeks ago. I am aware of the danger but prefer to take Vitamin A. But I want to do anything I can to slow the progression. Any tips?
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