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• juxtafoveal telangiectasia type 2 a
• Posted: 2012-02-08 20:54:49 By Carrie A
• hi my name is carrie i am 49 years old and have had this diease since i was 42 and know of no one else with this diease so if anyone knows of anyone on this site with it i hope to hear from you
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• Vision Through Words
• Posted: 2011-05-19 14:31:20 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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• Wrong Diagnosis
• Posted: 2010-11-07 13:41:40 By Maha F
• Hello everyone,
  
  I am pretty new to this site, here is a background of my story. About 2 months ago, I went for a checkup with my ophthalmologist. After dilating/examining my eyes, she asked me how my night vision is. I told her that it's not great, it's ok, but it hasn't been great for as long as I could remember. She informed me that my rods are sick, and that I should see a retina specialist. A few weeks later, I was sitting in the office of the retina specialist waiting for my eyes to dilate. I was anxiously waiting to get the appointment over with so I could go home to have dinner with my husband and son. I just thought that I was born this way, not seeing very well at night, and there was nothing I could do about it and that nothing else would happen. I had no idea what was about to happen. When the doctor came in and examined my eyes, I asked "what exactly is it do you think I have?" He replied, "what I believe you have is a condition called retinitis pigmentosa." I immediately knew what it was, there was no need for him to explain. I told him that he had to be wrong, that there was no family history of this, not even my great-grandparents had anything wrong with their eyes except maybe cataract surgery in their 70s. He told me that I most likely had a recessive form and the positive thing about it all was that my son had a 1 in 1000 chance of having this disease. I was a little bit relieved but very scared as to what the future had in store for me. I was depressed for a while. After telling family and receiving a lot of support, I was urged to get a second opinion. My dad, also a doctor, informed one of his colleagues about my diagnosis. He referred me to one of the best doctors in New York City who took me right in to do an ERG, visual field test, as well as other tests (all this within a week of hearing of the RP diagnosis from the first doctor). After all of these exams, the doctor told me that my condition does not look like RP, especially since I have 20-20 vision...but something even more rare called enhanced s-cone syndrome. It's a condition that is similar to RP, but at a much slower progression. He informed me that I would most likely NOT need a guide dog or a cane and that my vision probably won't change much for at least 10 years. Because the disease is so rare, there is little else to be known.
  
  I am wondering if there is anyone else out there with enhanced s-cone syndrome. I would love to meet people who are going through the same thing. If so, you probably know a lot more about this disease than I do. I would like to learn more about it. When were you diagnosed? What are your symptoms? Have you noticed a lot of changes over time?
  
  Thank you so much.
  
  **I pray each and everyday for everyone who is affected with an eye condition, and I am hopeful that there will be TREATMENT for inherited eye diseases in our lifetime.**
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• join my blog to chat
• Posted: 2010-09-03 13:25:59 By Janet A
• I'm inviting you to join me in a group on MomsLikeMe.com called "degenerative eye diseases ." We can use it to share information and photos, or even coordinate meet-ups. It's a great resource and I would love for you to join me there.
  
  To join, click this link
  http://pittsburgh.momslikeme.com/grp/moms.pittsburgh/degenerativeeyediseases?pwd=hula-haled
  
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• Looking for a pediatric retinal surgeon
• Posted: 2010-06-08 20:35:40 By
• I am moving back to Oregon and we are in need of a pediatric retinal surgeon. I have two 16 year olds with retinopathy of prematurity. My youngest has exams under general every year and has just started a round of laser surgeries. My boys are not text book with their disease and we need someone very experienced. If you know of anyone please let me know. Thanks
  Lori
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• RP Social
• Posted: 2010-05-05 21:45:28 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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• LCA
• Posted: 2009-12-30 19:59:11 By Holly S
• I have had LCA since I was born, and have very little vision. I can see light, and patches of dark when there is a large object like a wall. I've never had colour vision, so the dark patches aren't even black. I don't really know how to describe them, but i'm sure people with similar vision understand.
  
  Though i live in the UK I am curious as to what sporting oppurtunities are offered to people with the same sort of vision level as me. I'm sure that it'll be pretty similar as it is in the US.
  
  I'm 15 and I do take part in sports and things with fully sighted people my age, but was interested in what's offered for visually impaired people. I do take part in british blind sports athletics, but as that's only really in the summer it leaves the rest of the year quite empty.
  
  I do a lot already, as I swim and sometimes play goalball (although I don't really enjoy it all that much), but want to make sure I can take every oppurtunity there is.
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• WE NEED HELP PLEASE!!!
• Posted: 2009-05-31 21:22:12 By
• My mom just recently went blind in her left eye... How it started she
  
  was going to eye dotor because her left eye was watering and the
  
  doctor give vigamox eye drops to used and that wasn't helping so she
  
  went back and he gave her nevanac eye drops and told her to used them
  
  4 times aday for 3 weeks and within that first week she notice blurred
  
  vision only at night when the light were on she could see fine but if
  
  she walk outside at night she couldn't see and also her eye was
  
  getting red swollen and very itchy so she went back to doctor and told
  
  him her eye was getting worse since she had been useing the nevanac
  
  eye drops her vision would get blurry at night and irriated he run
  
  some test told her she was fine good vision and he told her to stop
  
  using nevanac eye drops and come back in 3 weeks... so she was not
  
  happy with that because she is having blurred vision so she made appt
  
  with a different doctor and by the time she got to the new doctor it
  
  was getting worse and he run test on her he said she has good vision
  
  and give her some steroids to clear up redness and itchy so she went
  
  home and 2 days went by and she could only see out of the corner of
  
  her eye and that was only light so she went back to doctor he told her
  
  that her optic nerve was swollen large and he told her to go to local
  
  doctor and get blood work and come back in one week and that her
  
  vision would not get any worse so she went home and her eye went
  
  completey black she could not see anything but black so we went to er
  
  and he told her she would never see again and to go back to her
  
  doctor the next day and she did and they tested her and said she would
  
  never see again in left eye becuase the retina died and also the optic
  
  nerve in right eye was swollen now. so they put her in hospital for 8
  
  days and run every test on her and blood work after blood work and
  
  done surgery on her eye to take samples out to test it and after all
  
  that they have found nothing so they sent her home with steroids and
  
  the nerve is still swollen in right eye... so we have went all over
  
  for answers and no one know why she is afraid she will lose her right
  
  eye too...so if anyone has ever heard of this please contact me please
  
  we need answers
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• Bietti Crystalline Dystrophy
• Posted: 2009-03-30 03:36:52 By Christine K
• Recently my sister and I were both diagnosed with Bietti Crystalline Dystrophy. We have found it very difficult to obtain information regarding this disease and would like to know if any one else has been diagnosed with this disease as well.
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• Congratulations to Scott MacIntyre!
• Posted: 2009-03-05 11:51:04 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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• LCA / RPE65 gene defect
• Posted: 2009-03-03 16:50:43 By S B
• There's a natural source of 9-cis-retinal (which can replace the absent 11-cis-retinal caused by the RPE64 defect) available. Please follow this link to the RNIB forums, where the latest versions reside: http://www.rnib.org.uk/messageboard/thread.php?threadID=6243&topicSort=desc
  
  There's also trials under way on a synthetic retinoid which is supposed to do the same thing:
  
  Oral Retinoid Enters Trials
  A synthetic retinoid has begun a Phase 1 safety study. The orally administered compound is designed to replace 11-cis-retinal, a part of
  the retinoid-rhodopsin cycle that is essential for visual functioning in Lebers Congenital Amaurosis sufferers.
  The hypothesis of synthetic retinoid replacement therapy has been proved to be sound in earlier trials in rodent models.
  The open-label single centre study will assess the safety and tolerability of the compound when administered multiple times to healthy adult
  volunteers. The trial will examine six separate dose strengths. QLT hopes to announce preliminary data from the trial in the first quarter of 2009.
  Ophthalmology Times Europe
  October 2008
  
  Good luck!
  
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• HELP!DON'T KNOW WHAT'S WRONG WITH MY HUSBANDS EYE'S!
• Posted: 2009-01-25 02:15:10 By MICHELE S
• My husband was diagnosed with lazy eye by a country physician (which was in the 1970's at 4yrs old)in his left eye which he could see out of just things were fuzzy a little and the eye went toward the middle a little.His right eye was normal & his family was dirt poor they couldn't afford a specialist so they used the patch treatment but it didn't seem to get better it seemed to make it worse as he got older the vision in the left eye got fuzzier and the eye moved closer to the middle and the sight in his right eye started going bad as well by the time he was 6yrs old he had lost complete sight in his left eye they way he describes it to me is that its like someone has taken a black dot and stuck it on his eye because it moves when his eye moves but no light is getting in then about 3months ago he had a severe migraine and after 36 yrs of no sight in that left eye he could see in that eye but it only lasted a week he had perfect vision I know I tested him everyday because I was stunned and was having a hard time believing now here in the last 3yrs his right eye has gotten worse he has been have blind spells were he will go completely blind in his right eye for up to 30 minutes seems to mostly happen when he is stressed out real bad.He has tried over the years to get a diagnosis but the doctors told him whats the point his to old to do anything about it.So his got the attitude of why should it matter if I find out their is no reason to.I'm wanting to find out what he might have?How dangerous it is?How much longer he has of sight if not treated?So I can prove to him there is a need to have his eyes checked by a specialist if not he want be able to walk down to the store like he loves to do without the help of a guide dog or he want be able to watch his daughter get married or watch his son grow up.SO IF THERE IS ANYONE OUT THERE THAT CAN HELP ME PLEASE DO! IT WILL BE GREATLY APPRECIATED! THANK YOU!
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• Discounts on Makeup Services Help Visually Impaired Women Look Their Best
• Posted: 2008-10-08 15:18:02 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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• Atopic dermatitis causing blindness
• Posted: 2008-03-11 16:35:45 By rhonda s
• Hello, I was wondering if anyone had any infomration regarding blindnes caused by atopic dermatitis ? I've looked online and cannot find anything. Thanks !!!!!!!!!
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• Race to Cure Blindness - Foundation Fighting Blindness
• Posted: 2008-02-29 09:26:19 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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• scar tissue
• Posted: 2008-01-28 06:33:04 By terri h
• my son is 17, he was diagnosed with chroideremia at 11. he had 2 laser sugeries at that time to stop bleeding vessels. the surgery was a success but know he is losing sight in that eye due to scar tissue. the disease has not progressed. his dr has said that the only thing that could help him would be stem cells. i would like to know if anyone has any experience with the scar tissue and if they have found any treatments?
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• Confused and need advice
• Posted: 2008-01-11 21:54:55 By JESSIKA Y
• Hello all! My son was diagnosed w/ Achromatopsia when he was 10 months old after an ERG, we were warned it might not be accurate as he fell asleep. At 3 he had another ERG- under anesthesia- and the diagnosis changed to Cone-Rod Dystrophy. His vision has been assessed as well as can be in a toddler. The glasses are helping. We just moved again and unfortunately have to start this whole process over. He is going to be starting school next year, so this grows more and more important. We don't have faith that either of the diagnosis are correct as the symptoms don't seem to fit, and I recently found out you should be awake for an accurate ERG! What tests should we ask for? We are seeing his new ped for a consult and referrals to (hopefully) a retinal specialist. I am hoping some experts here can help me to advocate for my son. Thanks in advance.
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• chloroquin retinopathy
• Posted: 2007-12-05 12:07:38 By Paul P
• Hello
  
  I am suffering of a Chloroquin-Retinopathy with a classic Macula degeneration in bull-eye form since 2002. Until now, my vision has decreased to 20 percent, although the drug treatment (drug containing “chloroquin”) which was designated for curing a disease of my lungs has been terminated back then.
  
  Unfortunately, I am not able to gain access to any substantial information around this topic in Europe, in particular in Germany, where I am living.
  
  I am kindly requesting your guidance to any information source or contact that would perhaps be able to help me and to potential treatment possibilities. Even a report helping to understand what kind of evolution the disease can take would be helpful.
  
  I would be more than happy to answer any complementary question you might ask on my medical background.
  
  NB: Please apologize my English, I am French and live in Germany.
  
  Yours sincerely,
  
  Paul Pierron
  
  E-Mail: paul.pierron@arcor.de
  
  
  
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• chloroquin retinopathy
• Posted: 2007-12-05 10:53:04 By Paul P
• Hello
  
  I am suffering of a Chloroquin-Retinopathy with a classic Macula degeneration in bull-eye form since 2002. Until now, my vision has decreased to 20 percent, although the drug treatment (drug containing “chloroquin”) which was designated for curing a disease of my lungs has been terminated back then.
  
  Unfortunately, I am not able to gain access to any substantial information around this topic in Europe, in particular in Germany, where I am living.
  
  I am kindly requesting your guidance to any information source or contact that would perhaps be able to help me and to potential treatment possibilities. Even a report helping to understand what kind of evolution the disease can take would be helpful.
  
  I would be more than happy to answer any complementary question you might ask on my medical background.
  
  NB: Please apologize my English, I am French and live in Germany.
  
  Yours sincerely,
  
  Paul Pierron
  
  E-Mail: paul.pierron@arcor.de
  
  
  
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• daughter with Iritis plus son and daughter with CME
• Posted: 2007-11-12 23:29:22 By L B
• Both our son and daughter have Cystoid Macular Edema they are 12 and 9 years old. It is much more pronounced in our daughter and fairly insignificant (for lack of a better word) in our son. We have been searching for a cause and even went to the National Eye Institute when it was believed that they may have X linked Retinoschisis but they do not. Last week it was discovered that our daughter also has Iritis though she had no signs a few weeks previously. She is now on Pred Forte drops for the Iritis. The doctors are now looking for a possible inflammatory cause. Our daughter tested negative for Juvenile rheumatoid arthritis (son refused the blood test) but that or some other form of arthritis has not been eliminated. Our son’s fluorescein angiogram shows some leakage. The staff at children’s hospital of LA injected the fluorescein into our daughter’s arm tissue. So we have no results for her. The assumption given my son’s result is that she may also have leakage. Both their ERG’s showed super eye function (50% above normal) except the cones are slightly off.
  
  We first learned of the problem with our daughter in the spring and believe that she may have had it for about a year now. We only checked our son as a precaution. I can’t believe that our children are the only brother sister with this problem (no family history) for which a cause has not been found. I would appreciate any advice or precautions. Oh, our daughter has sensory neural hearing loss and migraines since birth.
  
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• cone dystrophy-DHA
• Posted: 2007-10-27 12:30:24 By demet a
• hi,
  my daughter has got cone dystrophy. She is 4 old.
  Our dr. recommened to use DHA.Ýf any one useing DHA, please contact me.
  Another guestion. As I heard that there is a dr. in england name is ROBIN ALI.he is searching about cone dystrophy.if anyone knowledge about him please contact as soon as possible.regards.
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• demet
• Posted: 2007-10-27 12:23:51 By demet a
• hi,
  my doughter has got cone dystrophy. She is 4 old.
  Our dr. recommened to use DHA.Ýf any one useing DHA, please contact me.
  Another guestion. As I heard that there is a dr. in england name is ROBIN ALI.he is searching about cone dystrophy.if anyone knowladge about him please contact as soon as possible.regards.
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• demet
• Posted: 2007-10-27 12:09:59 By demet a
• hi,
  my doughter has got cone diystrophy. She is 4 old.O
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• cone rod dystrophy
• Posted: 2007-10-08 22:19:29 By bella d
• any specialist who can cure this
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• Need a pep talk
• Posted: 2007-10-04 08:11:54 By Janice K
• I'm a 51 year old pediatrician and I've resigned from work in the clinic because I just don't see right. My working diagnosis is cone-rod dystrophy--atypical because my central vision is good. I have a lot of trouble seeing contrasts especially rashes and throats in the clinic. Just feeling really sad. I'll be teaching 1st and 2nd year medical students, but it won't be the same as seeing patients. I've just been having eye trouble the past 5 years, and recently my ERG is worse. I want to leave while I'm still safe for my patients. Requesting kind words. Thanks much. JK
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• Needing a pep talk.
• Posted: 2007-10-03 20:53:24 By Janice K
• I'm a 51 year old pediatrician and resigned from my clinic position (last day is 10/6/07), because of vision trouble. My working diagnosis is cone-rod dystrophy, although the retina doctor says my case is atypical because my central vision is good. I have alot of trouble seeing contrasts (rashes is the clinic) and the light outside has gotten to be a real problem. I just feel sad because I already miss seeing patients, and after 26 years, I was just getting good at it. :) I'll be teaching the first and second year med students in a seminar class, so I'll get to use my doctor skills--but it'll be different. I'm requesting kind words. Thanks so much.
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• hello!
• Posted: 2007-09-26 14:20:50 By Barbara L
• Hi: I am new at this; i was caught very early with bleeding and swelling around the retina; they stabilized it with Avastin; I am so grateful; how are you all; I care about what you are going through; email me at psalms5556@yahoo.com I care and support! Hope to hear from some of you too. It is scary; Have a wonderful day! :)
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• ocutech autofocus bioptics
• Posted: 2007-09-24 05:37:41 By Yvonne L
• Has anyone with cone/rod dystrophy used one of these telescopic lenses on glasses with an autofocus? I have no idea if they are available in Australia nor how much they cost? Are they suitable for the classroom?
  Yvonne
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• Does anyone know the phone number for the federation for the blind??
• Posted: 2007-09-19 11:38:36 By Wendy N
• THANK YOU! I HAVE TO SEND THEM THE ADDRESS AND PHONE NUMBER OF MY EYE DOCTORS.... THANK YOU SO MUCH IF YOU HAVE IT... LOVE WENDY
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• Anyone know how to contact the moderator??
• Posted: 2007-09-18 07:44:12 By Alisha A
• Hey---does anyone know how to contact the moderator on the site? I'd like to start a Cone-Rod Dystrophy thread instead of posting under "Other Retinal Diseases". I think there are enough of us to make a great little group!
  Alisha
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