Page 1 of 1.

Please login to post a new message.

• my new blog about living with a retinal degenerative disease
• Posted: 2013-06-03 21:18:43 By Heather G
• I have started a blog where I will share stories, offer advice, and generally stay connected with people who are affected by Stargardts or other visual impairments.
  Please take a look! Thank you,
  Heather
  
  http://hgarbitt.blogspot.com/
• View Full Thread

• cone rod dystrophy
• Posted: 2012-08-20 07:09:41 By janine v
• Hi my name is janine and i am 46 years old. I have CRD and would like to talk.
• View Full Thread

• CRD
• Posted: 2012-05-22 17:31:15 By Jessica Y
• Hi my name is Jess and I am 40 and have CRD. Just looking for someone to talk to with my condition.
• View Full Thread

• Posted: 2012-04-21 15:24:27 By Mary D
• Hi my name is Amanda and I am 30 years old. I was diagnosed with Stargardt’s when I was 18 years old. I have had bad eye sight for as long as I can remember. In December of last year during a eye exam my eye doctor thought I had RP instead of Stargardt’s or I had both. I went to the Moran Eye Center in Salt Lake City, Utah and the doctor there said it was CRD and that it was like RP and Stargardt’s on steroids. I am having a hard time with this because now I am going to lose all my sight. My vision is 20/250 in my left eye and count fingers in my right eye. Does anyone else get bad headaches? I avoid bright light as much as I can the light sensitivity is crazy. Also I was wondering if there was anyone on here from Elko, Nevada area? I am new to the area and need some friends. My email itsme0768@yahoo.com is Thank You
• View Full Thread

• Introduction
• Posted: 2012-04-16 11:59:47 By Charlotte R
• Hello, My name is Charlotte and I'm 39. I was diagnosed with Stargardt's when I was 11 and have been legally blind since I was a teen.
  In December of last year, during a routine check up my doctor announced that he now felt my symptoms pointed to Cone_Rod Dystrophy rather than Stargardt's. I was shocked. I had planned to spend my life with poor vision, but not to lose it completely.
  I'm a mom of two, married, and am self employed as a sculptor and exercise instructor. I continue to do my art, but am not sure how much longer I will be able to continue. There seems to be so many unknowns with this disease and it's frustrating to try and plan for the future.
  Would love to be able to chat with others about their experience.
• View Full Thread

• Cone Dystrophy
• Posted: 2012-03-23 10:23:32 By Kim H
• I have a 16 year old daughter who was diagnosed with cone dystrophy at 1 year. We have tried to have the ERG test done twice but she has been unable to tolerate the light. Her diagnosis was given to her based on her classic symptoms of cone dystrophy. Does anyone know of any surgeries or studies being performed on people with cone distrophy? Or can anyone tell me where to start looking for studies that she could be in? Sometimes the internet is just too overwhelming.
  Thank you
• View Full Thread

• Cone - Rod Dystrophy
• Posted: 2012-03-19 15:47:53 By Stacie T
• I have a 14 year old son who was diagnoised with cone & rod dystrophy about 4 months ago. He was given the full field ERG, which came back super normal and he was given the ERG of the Mucula (sorry if I misspelt the word) and it showed a depressed abnormality. He currently has 20/80 in left eye and 20/100 in right eye. He is seeing a retina specialist in the Boise, ID area. He suggested supplements. We currently have him taking Omega 3 and a liquid vitamin called Maxi Vision Whold body formual. Does anyone know if there is a better supplement that may be more beneficial? He complains of his eyes hurting and is very light sensitive. He has started wearing sunglasses while outdoors. I wish there were more I could do for him. Any information would help.
  Thanks
• View Full Thread

• Cone dystrophy for my daughter
• Posted: 2011-07-16 07:12:41 By NATARAJAN K
• Hello, my daughter is 5years 6months. Initially check up done for squint and for observing difficulties in the school. ERG test done, diagnosed with cone dystrophy.
  She was given glasses and occlusion of IE 2hrs/day and advised to review after 3months. As far we know, don’t have any history of hereditary. We are devastated and scared about her future. How to send school??. She cant mingle with Blind school also.Please help us with any informations or treatment. Thank you in advance.
  
  
• View Full Thread

• Vision Through Words
• Posted: 2011-05-19 14:30:05 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.
• View Full Thread

• Re: CRD & my son
• Posted: 2010-10-08 18:14:29 By Christine D
• Hi there, and aloha from Hawaii! My 11 yr old son was diagnosed in May of this year. He is currently at 20/100 in both eyes. We have him on mega doses of omega 3 fish oil, lutein, and bilberry. So far no improvement but he hasn't gotten worse either. I created an informational blog at www.retinaldystrophymom.blogspot.com if anyone is interested. I have so many thoughts that it would take way too much space here. I invite you to check out the blog and share it!
  
  Also, have several $2.00 off coupons for Bausch & Lomb Preservision eye vitamins if anyone could use them. They are good until 12/31/10 Will give them away, just need a postal address.
• View Full Thread

• RP Social
• Posted: 2010-05-05 21:45:56 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
• View Full Thread

• Cone Dystrophy
• Posted: 2010-04-30 02:13:07 By Oemi M
• Hi my name is Oemi and I am 17 years old and I was first diagnosed when I was 7. I am about to start college and I am becoming really discouraged and scared ,is there anything that you can tell me so I can feel a bit more confident in my upcoming experiences.
  Thank you
• View Full Thread

• cone rod dystrophy
• Posted: 2010-02-26 19:27:13 By Kara B
• Hello, my name is Kara. I am 35 and was just diagnosed with cone rod dystrophy. I never noticed any problems with my vision, other than wearing contacts from having near-sighted vision and a sensitivity to light that I thought was from having blue eyes and wearing contacts. But last summer, while having a optometrist appointment, I was sent to a specialist, as my doctor thought I might have RP. After having several tests, including an ERG, I was diagnosed with CRD. I have vision loss in my peripheral only. I can see colors fine. I feel like I can see in the dark fine and the sun is bright, but sunglasses work well. I am scared, but I have a really supportive family. I am more scared because I am a single mom to 2 young kids and I am one year away from finishing college so I can teach elementary school. I know that there could be worse things, I just feel like, at a time in my life where college and teaching have been a source of my purpose in life, besides being a mother, this news now changes everything. I am trying to be thankful that I have my vision and I pray that my disease progresses very slowly, like it has. It saddens me that I may not beable to see my children's faces or their children's faces. But atleast, they are safe where I will always beable to hear and feel them.
• View Full Thread

• Hello
• Posted: 2009-11-18 15:16:33 By Melissa J
• Hi my name is Mosi. I am 31 years old and was diagnosed with CRD when I was 9.Im not sure what my acuity is except that I can only see the big E with my left and barely with my right. I am here because I want to become more proactive in this community, and meet people who can understand me.
• View Full Thread

• Cone Rod Dystrophy
• Posted: 2009-10-02 02:57:47 By Muhammad A
• Hi......
  My 12 years old son was diagnosed with Stargard's since he was 5-1/2 years old. Genetic test were negative for Stargardt's. Now ERG and Fundus Photographs were done at Singapore Eye Hospital. Their diagnosis are Cone Rod Dystrophy. They did'nt recommend for Genetic testing again for Cone Rod Dystrophy. Can any help me what to do next to confirm if he has Cone rod dystrophy? God Bless you all Muhammad from Pakistan
• View Full Thread

• Cone-Rod Dystrophy and Pregnancy
• Posted: 2009-07-30 19:48:56 By Miranda L
• Hello,
  I am 27 years old and was diagnosed with RP at the age of 24 right after i had my first child. My vision declined during pregnancy and i am concerned that another pregnancy would do the same thing. Has anyone else had the same problem? My specialist says there is no research to link pregnancy and the progression of the disease, but im not too sure.
• View Full Thread

• Cone Rod Dystrophy
• Posted: 2009-07-15 04:08:41 By Muhammad A
• My 12 years old has recently been diagnosed with Cone Rod Dystrophy. Firstly we was diagnosed with Stargardt's. This was confirmed after having ERG Test. DNA testing not yet done.
  If any information available regarding latest research on Stem Cell or Genes Therapy are welcome. Please pass on.
  Regards.
  Muhammad from Pakistan.
• View Full Thread

• cone rod dystrophy
• Posted: 2009-06-07 12:49:24 By Sue Y
• My 14 years old son has just been diagnosed with cone rod dystrophy. He was also first diagnosed with having stargardts. The website indiates most people with CRD go blind at the age of 50. Will the progression stablize at some point? His visual acuity is 20/200. I am very concern how this is going to effect him later in live. It's hard to find information on this condition because it is so rare. Hope there will be a cure soon!
  
  Regards,
  Sue from Canada
• View Full Thread

• cone rod dystrophy
• Posted: 2009-04-16 13:37:14 By Lisa L
• My daughter was diagonised with Cone rod dystrophy when she was 13 months old. We were told it was hereditary but at that time, I was pregnant with my second child and I did not have a genetic screening done. She is now 22 years old and she has two sons, both of which do not appear to have this condition. The doctors have told us that her condition is not progressive. Her vision has not changed since her diagnosis. I am always looking for new research to pass on to her.
• View Full Thread

• cone rod dystrophy
• Posted: 2009-03-10 21:39:19 By wendy m
• My son has just been diagnosed with Cone rod dystrophy; he first was diagnosed with having Stargarts but since his last test his diagnose has changed, I have tried to find out more about Cone rod Dystrophy and how far will his eye condition will go, so I could try and prepare him for his future, so far no one can help me as Cone Rod dystrophy is not very common in New Zealand. Does anyone know will my son go completely blind?
• View Full Thread

• A supplement that helped my son...
• Posted: 2009-02-02 00:03:12 By S B
• ...who has cone rod dystrophy. Follow this link to the RNIB forums, where all my posts are now: http://www.rnib.org.uk/messageboard/thread.php?threadID=6243&topicSort=desc
  
  Good luck,
  Steve.
• View Full Thread

• Question
• Posted: 2008-10-29 23:37:48 By Stephanie R
• I am 46 and female. I am a manifesting carrier of X-linked Cone-Rod dystrophy. My Dad and Uncle were both blind with CRD. I have a 19 year old daughter with no symptoms.
  
  My question is as follows. We were recently in the car with my son who is 14.5 years old. It was 10pm and dark and we were driving on the highway. Out of the blue (we weren't talking about vision at all) he happened to mention that he sees better in the dark. He is nearsighted and wears glasses but his eyes have always corrected to 20/20 or 20/25. He also mentioned while we were driving in the dark that it is easier to read with his glasses off "because the print is bolder without the glasses." I thought these were odd comments from a teenager, especially since the CRD is not a topic of discussion in our family.
  
  My question is two fold. A) Should I be concerned and take him to my doctor in Iowa and B) Do any of you see text "bolder" without correction for nearsightedness (or at least when the sight was correctable?) I have heard that sometimes nearsighted people don't need glasses to read but not that the text was bolder.
  
  I don't want to scare him unnecessarily so even though I realize I could always have him evaluated I would rather wait until there is a reason or need to do so. Since he sees ok now with the exception of being more comfortable in the dark and the comment about reading without his glasses I am not sure the time is now.
  
  Thanks!
  Steph
• View Full Thread

• Hello
• Posted: 2008-10-21 20:53:46 By Luis G
• Hi,
  
  This is great news we have our own board.
  
  My name is Luis, I'm from Mexico and am 31 years old. I was diagnosed with CRD in january 2007. Although, preliminary symptoms, attributed to astigmtism and myopia, appeared since 2003 when I often confused colors.
  
  In january my visual acuity was 20/40 in each eye, nowadays, is 20/160 each eye. My sight has surprinsingly decreased, hope it stabilizes for a long period.
  
  Well, one of my next goals is to get a genetic testing. When done I'll tell you.
  
  Two months ago I atarted to take a supplement called "forever vision", it seems it's working, glare is minor and eye strain is lower.
  
  Best regards,
  
  Luis G.
  
  
  
  
  
  
• View Full Thread

• Hello to our group!
• Posted: 2008-10-09 13:42:57 By Colleen P
• I see we have our own group now thanks to Alisha I believe.
  Anyhow I have posted on the RP board a couple of times, but nice to talk with someone with same condition in family.
  My son was diagnosed last year at U of M in Minnesota. He was 19 at the time. His ERG showed definite cone-rod dystrophy, although at present his central vision is still correctable with glasses, but he has totally lost all his lower peripheral & has spotty vision in other directions.
  We are really trying to get his gene identified. I would like to know if anyone else has had success with finding the genetic cause.
  We have 3 other children younger whom I haven't had officially tested yet. Hope to talk soon & share some ideas, etc. Colleen
• View Full Thread

Page 1 of 1.