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• RP
• Posted: 2009-10-20 18:34:58 By Jennifer H
• Hello, I am a 39 yr old female. I just found out yesterday that I have RP. I never heard of RP until this past Aug. I was actually glad to finaly have an answer to many situations. Like walking into things, tripping and being worried about going into dark places.............
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• MDJunction.com
• Posted: 2009-10-08 00:40:21 By Melissa M
• Hello everyone. I want to let you know about a wonderful support group. You can find it at www.MDJunction.com. We welcome any new members with RP. Hope to see you there.
  
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• Cone Rod Dystrophy
• Posted: 2009-10-02 02:51:12 By
• 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
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• Good retina doc in Seattle area?
• Posted: 2009-10-01 16:19:29 By Kathryn K
• Hi --
  
  I'm looking for a recommendation to a good retina doc in the Seattle (or eastside) area. I have RP and perhaps Usher's and it's been many years since I've seen someone, so not sure who is considered the best these days. I've also asked my optometrist and am awaiting an answer but figured I'd also ask here as well. Thanks much!
  
  Kathy
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• Posted: 2009-09-28 16:22:17 By Lori S
• Hi I'm 28 and have RP and live in the Hutchinson, KS area and was wondering if there's any support group or anything similar in the area....the closest one that I've been able to find is in Kansas City, which is over 4 hours away, but I wasn't sure if I just wasn't looking in the right place.....please let me know if you know of something available in the area. thanks
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• New Website - Blinding Ambition
• Posted: 2009-09-25 15:09:05 By Eldie T
• So I've had this idea to create a comprehensive site for the visually impaired community. A place to aggregate useful information on the subject, post related articles, and talk to others in similar situations.
  
  My first step is to build a blog to post useful articles and information. Please check it out and if you have any suggestions let me know.
  
  BlindingAmbition.net
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• Life Insurance
• Posted: 2009-09-23 17:20:19 By Josh C
• This is an open question to anyone diagnosed with a degenerative eye condition.
  
  I am curious if anyone has any anecdotal feedback regarding obtaining term life insurance after being diagnosed?
  
  More specifically, I am 28 and starting a family which is right around the time one might obtain a reasonable life insurance policy. However I was diagnosed with Cone-Rod Dystrophy a couple years ago. I still have a good portion of my vision and my health is good, but I am unsure of how this, or similar conditions, would affect a company's desire to extend a policy.
  
  I will be contacting a broker shortly about my specific situation but I would love to hear from others regarding this issue.
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• hı
• Posted: 2009-09-21 19:44:51 By erhan k
• hı
  ı am erhan from turkey.ı have rp.ı am 38.my vision is very loss
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• rp and ssa
• Posted: 2009-09-21 10:38:17 By Ricky S
• is anyone drawing disability for this disease??? I have rp and hearing loss as well and was wandering if anyone had any ssa sucess stories ???
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• 3 Year Old
• Posted: 2009-09-02 13:36:19 By Bridget P
• Hello Everyone,
  It has been a while since I have been here. My son is now 3. Time goes by way too fast. Anyway, when I was pregnant I heard from a lot of you about how life would be for me and my son. He DOES know that "mom" can't see, BUT he takes great advantage of that instead of helping me!!! My legs stay bruised up from running into and over his toys. But when we go off somewhere he makes everyone that we are with turn on every light to every room that we go into b/c he knows that is what I have to do.
  Is it normal for him to be doing this?(Taking advantage I mean.) I would also like to hear from parents in small towns with no public transportation with kids in Pre-K. How do you get your kids to and from school? I have plently of friends and family that are willing to help me once my son starts to school, but I feel bad having to put people out. They may want to halp in the beginning but what happens when they get tired of having to deal with an EXTRA child??
  Hope you are all doing well!!
  Bridget
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• Posted: 2009-08-30 00:02:26 By Lindsey S
• hello Mayra R, my night vision is affected greatly by my RP. I am still young, I want to go out, experience things but I find it hard to go out at night sometimes in unknown places it makes it very hard to enjoy myself when im constantly worried about tripping or falling, even bumping into things. The whole factor of not being able to see what you are doing or where you are walking makes events at night unpleasant sometimes.
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• Hi California girl
• Posted: 2009-08-29 14:12:19 By Alvaro G
• Hey I am Alvaro and I also have RP.
  I dont have many friends with RP so please email me tot alk about this eye disease that indeed makes you face many challenges.
  Email me at: alvarorp30@yahoo.com
  Have a great day.
  Alvaro.
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• Omega 3 and Vitamin E
• Posted: 2009-08-28 19:59:57 By Thomas B
• I have been told that Omega 3 is a great thing for RP and has been shown to slow the progression. Most of the Omega 3 supplements that I've found contain Vitamin E which I've been told to stand clear of. Is 2000 IU an allowable amount of Vitamin E if I take it 3 times a week?
  
  I appreciate the help.
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• scyfix treatment for retina pigmentosa
• Posted: 2009-08-22 02:21:29 By erdal i
• what is this scyfix treatment from europe is it a gimmik or genuine
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• ED
• Posted: 2009-08-21 21:51:39 By Thomas B
• Does anyone know an ED pill that is ok for RP? I know Viagra is not supposed to be used.
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• yoga class in silver lake
• Posted: 2009-08-21 16:37:14 By Pamela J
• Hello potential yogis,
  
  Greetings. I'm affiliated with an Ashtanga Yoga Studio in Silver Lake run by authorized teacher, James Butkevich (http://www.ashtangayogala.org/). We are planning on offering a free class to those that are interested. It is one way for us to reach out to the local community.
  
  First, a little about the style of yoga that we practice.
  
  Ashtanga is a system of yoga that differs from other styles in that postures are tightly linked with the breath. So, every posture or movement has an inhale or exhale associated with it. The goal is to focus more on the breathing and less the posture. Ultimately with practice, this system of yoga becomes more of a moving meditation. Ashtanga is made up of a set series of postures that build upon eachother. When taught traditionally, a student begins with a few postures and receives additional postures only once proficiency is achieved on the last posture. In a traditional class, students practice at their own pace and level of ability, but in the company of other students and with the encouragement and adjustments from a teacher as needed. This style of practice can also be done at home and can have long-lasting benefits, such as helping with stress, anxiety, mobility and improving quality of life. For these reasons, Ashtanga may be well-suited for students who have individualized needs and for different age groups.
  
  We will probably structure the class and the schedule based on the needs and schedules of those who express interest. If you have any questions, please feel free to email me at drishtipath108@gmail.com for more info.
  cheers,
  Pam
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• looking to Network
• Posted: 2009-08-19 02:08:49 By Lindsey S
• Hello all, I'm new to the site and I'm looking to network with others with RP. I'm an 18 year old girl from California and I was diagnosed with RP this year. It has been tough and I am looking for others who share similar worries and difficulties from this disease.
  please respond to this message if you have RP and we can begin to dialogue about our similar hardships and hope.
  
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• supposed treatment
• Posted: 2009-08-14 02:41:50 By
• Greetings,
  
  Oscar here. Has anyone heard of Microcurrent NeuroModulation Therapy..(MCN) It's a supposed treatment for Macular D and RP, it's on www.Scyfix.org... and boy is it pricey... is this a crock? Most likely.
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• A cure for RP on its way soon
• Posted: 2009-08-13 13:12:21 By Alvaro G
• Hi everyone:
  This last post here was very honest and I am happy someone said it like it is.
  I have been uptodate with latest research and latest clinical studies since 1995 when I was diagnosed with RP at age 19, now after so many years I can assure you all that my hope for a cure for RP in the next 15 years is VERY REAL.
  I had the pleasure of being the patient of one of the best Retina doctors in all Latinamerica and he said that our best hope is STEM CELLS RESEARCH, he says although the chip implant and the artificial eye can be cool and work ok the amount of sight that we can get is not extremely optimistic, obviously cant restore what we dont have.
  He said that genetherapy is in his opinion a risky business, because the long term effect of it is not clear at all.
  However the stem cells transplantation when we are talking about retinal cells that were damaged by RP, that is a real hope, that healthy retinal cells can be transplanted into an eye and can substitute or better yet regenerate the dead cells restoring the vision.
  This research is being lead by some Americans and British scientists and ophthalmologists and the belief of my doctor was that in the next 15 years there really may be a ttoal cure for RP with this process.
  So I staye xtremely hopeful and optimistic and I alsow ant tot ake this opportunity to offer my friendship to anyone interested in a friend who understands whats going on in life when you have RP.
  My email is: alvarorp30@yahoo.com
  And alstly I want to wish my doctor the best in Heaven, he passed away recently due to Cancer and I miss him alot.
  I will always remember his advice and hope that gave me.
  I am moving to the US ina couple of years and will look for ana wesom doctor like him.
  God Bless You All.
  Alvaro.
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• Optimism for a Restorative Cure
• Posted: 2009-08-12 14:11:13 By Ken B
• Hi Everyone,
  
  I'm curious if people are feeling optimistic about a restorative cure coming out for RP. We've all read (I'm sure) the articles on the site about different treatments, clinical trials, and other research for RP. And I think we've all heard for a very long time that a cure will come out in the next 5-10 years.
  
  Personally I'd like to remain optimistic that I'll get my vision restored in the next 5-10 years (I have Xlinked RP) - but I do find it rather irritating to see all these articles and then not hear 'when' a treatment will get released to the general public.
  
  
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• Erectile Dysfunction
• Posted: 2009-08-10 22:02:28 By Thomas B
• Does anyone know an ED pill that is ok for RP? I know Viagra is not supposed to be used, I think because of the blood flow pressure to the eye.
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• the london project
• Posted: 2009-07-27 23:09:44 By tan b
• how well is the project progressing
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• Posted: 2009-07-24 10:52:22 By Jane D
• hi there everyone,
  my name is Jane DeVinney and I have RP. Has anyone that post or reads here ever gone to the RP chat room on Wednesday nights> I used to go there every week until it dwindled down to no one ever being there.
  I have met many great friends there and still keep in touch with some of them.
  I will try to be there on Wednesday night s and chat too.
  My RP was dicovered when I was in my early 30's and am now 55. my younger sister also has RP but she still drives and works. I am on disability.
  Hope to see someone in the RP chat room!
  Jane
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• RP CHATROOM
• Posted: 2009-07-12 22:53:19 By Maria P
• Hello there,
  I am forwarding this info in case anyone would like to join us in the RP chat. Many post here and on the RPLIST and there are several of us with Usher as well.
  
  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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• CME
• Posted: 2009-07-05 19:17:32 By Ingrid K
• Anyone here who has RP who has developed CME as a result? How are you be treated? Has anyone used immune-supprasent therapy to keep the cysts under control as oppose to Diamox or steriod therapy?
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• I have RP and I am looking for some sales people
• Posted: 2009-07-04 18:31:04 By Alvaro G
• Hi all:
  I am Alvaro, I have RP and I work at a Medical Tourism Company in South America, that is looking for sales people anywhere in the United States.
  You can see more about us at: www.truedoctors.com
  We offer a commission based job, for now that is, we plan on opening an office in the US in a year but for now we can only offer a commission based job.
  However the commission are high and the job is not hard.
  400 Dollars is the Minimum youc an earn and the Maximum per sale is 1000 Dollars.
  Please if selling Medical Tourism Packages seems not so hard for you, let me know.
  My email is:
  alvarorp30@yahoo.com
  Happy 4th of July to you all!!!
  Alvaro.
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• are you on twitter
• Posted: 2009-06-21 13:40:44 By nick h
• Hi Friends,
  
  Is anyone here on twitter. Please join me on twitter. My twitter handle is nick_g123.
  
  http://www.twitter.com/nick_g123
  
  It will be fun, we will be able to exchange messages in real time on web or phone.
  
  Nick
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• My Daughter with BBS
• Posted: 2009-06-14 23:20:11 By Christie K
• My 8 year old daughter was just diagnosed with Bardet-Biedl Syndrom (BBS). She has RP and is legally blind already. I am looking for a support group in the Detroit area and a group for kids with RP in the same area. I want her to get to know other kids with her condition. She is the only visually impaired child in her school and it is becoming painfully clear that her peers are less and less tolerant of her special nature. If anyone knows how I can contact these groups I'd really appreciate it. I know FFB probably has some ideas but the more options I can find the better.
  
  Thanks
  
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• Portable Mp3 Players
• Posted: 2009-06-09 15:24:25 By Ken B
• Hello,
  
  Does anyone have any good recommendations on portable Mp3 players for people with RP? I currently have a pretty basic one with simple controls but I can't read the screen. Are there any brands out there that let you configure the text format? I do best with light text on a black background. And hopefully one that's not too menu driven.
  
  Thanks.
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• cataract surgery for rp patient
• Posted: 2009-06-03 11:48:02 By Davida L
• My names id Davida Luehrs and i have a 5 degree field and 2100 acuityas a result of RP. My cataracts have gotten more dense and I have been told that now is the time to have the left one out. I would like to hear from people who have rp and had a catqract removed, I am looking to hear both the good and bad side of the removal. Feel free to get in touch with me directly, or post here. My surgery is the beginning of July
  
  I am very involved in the Northern Virginia chapter and all FFB that we have hosted, I am always glad to talk to othersto either share ideas or share why I think it is so great to get involved.
  I also am a CNTF participant
  Davida Luehrs
  Reston VA
  703-742-8043
  ddluehrs@aol.com
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