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• HAPPY THANKSGIVING
• Posted: 2007-11-21 16:44:42 By Darran Z
• HAPPY THANKSGIVING EVERYONE!
  
  http://www.youtube.com/watch?v=2vdL233IcS8
  
  Darran
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• More CNTF news
• Posted: 2007-11-20 18:47:38 By Carol C
• Spoke to my brother today, he continues to notice widening areas of vision. He has to sit close to the front of church to see the screen, but then can only see the pastor's face (can see more of an object the farther away he is). Sunday, he noticed he could see the pastor's face and his feet at the same time. He can see several words at a time while reading, without his glasses, which he always needed before. He also notes that usually he can only see objects in the dark in his very far periphery. Now this area is larger. And, he can catch a ball thrown to him by his kids. So I guess he has improved night vision, as well as improved acuity and field. Now, this is his subjective experience, and his vision was pretty far gone already at diagnosis, so improvement may be more noticable for him than others. Or, he may be one of those with the higher dose. More objective testing on Dec.13. Carol C.
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• Vitamin A and DHA DID NOT slow down RP
• Posted: 2007-11-20 17:10:08 By Darran Z
• I don't know why I missed this, but this is the conclusion of the Vitamin A and DHA study Berson and Company did and published in the Archive of Ophthalmology 2004:
  
  Conclusion: In patients assigned to receive 15000 IU/d of vitamin A, this randomized trial showed that 1200 mg/d of docosahexaenoic acid supplementation over a 4-year interval did not, on average, slow the course of disease in patients with retinitis pigmentosa.
  
  So what's the hype over Vitamin A and DHA?
  
  Darran
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• Stem Cell Breakthrough on CNN.com
• Posted: 2007-11-20 12:27:42 By Kenneth D
• Here is a link to a promising article on a new breakthrough using Adult Stem Cells...
  
  http://www.cnn.com/2007/HEALTH/11/20/stem.cells.ap/index.html
  
  Years off but at least they are still searching. I will as always keep my hopes up!
  
  Ken
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• Drops for DME
• Posted: 2007-11-19 15:56:43 By Larry G
• Nikki S.
  
  I just saw your post for CME. I have had chronic CME for several years. I started on Diamox sequels which prevented the CME from getting worst until I had a bad reaction to it. Now I am taking the Trusopt drops AND Nevanac drops. I just have to wait 15 minutes inbetween drops so they don't wash each other out. This combo seems to have made the CME better, maybe it would work for you.
  
  Larry
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• Night time use
• Posted: 2007-11-17 18:39:45 By Holly H
• Hi Everyone my name is Holly i am 19 and have been diagnosed with RP since I was 14. I am starting mobility training with a teacher at my school to learn to use a came in the dark and I was wondering how long does it take to complete this training and does anyone use a came in the dark and does it help in the dark
  
  Thank you
  Holly
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• clinical trials for rp
• Posted: 2007-11-17 12:19:53 By cheryl w
• how come there have been no clinical trials/seekiking patient volunteers, for clinical trials being conducted in california re: people with rp??? all the clinical trials seem to be conducted back east. my name is cheryl wilson and i have rp. i am willing to volunteer for any/all clinical trials being conducted in california....anxiously awaiting a hopeful response..
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• CME
• Posted: 2007-11-15 22:59:00 By Nikki s
• Hello all,
  
  So ok i went to the retina specialist about two months ago or so and they said i have cme so they gave me some drops to try and i tried them and they didnt work so he said he wanted to shoot steroids into my eyes so i thought about it and went back and let him do it and it cleared it up pretty good for about two weeks then went back to normal so i have to go back to the dr for a follow up and they looked at the back of eye and said still same amount of fluid and he let out a sigh and said well do you want to do the shots again i said yes and he said i am the worse cawe that he has seen!!! that wasnt very comforting so he gave me the shots and this time it didnt work in fact i think my eyes are as bad as they have been in a long time especially my left which is my bad eye i use to be able to see some now i cant see anything but vlur i dont go back until the 30th my question is what if these shots dont work? what next? i walk around with fluid in my eyes forever til i get a macular hole?? i am angry i got my hopes up about these shots cuz they worked the first time...i wonder why they didnt work this time??? anyone know the next step if there is one if the drops are not doing it for me???
  thanx
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• Santa Fe Protocol/Dr. Alston Lundgren
• Posted: 2007-11-13 11:52:29 By Gretchen K
• Is anyone using this message board aware that the Santa Fe Protocol for treating Macular Degeneration also is effective for treating RP and other genetic diseases of the retina? It is an acupuncture treatment developed by Dr. Alston Lundgren who practices medical acupuncture. His website is www.reverseAMD.com He can also treat the chronic migraines that are caused by some vision problems. I've had chronic headaches for 2 years (not vision-related), and with one treatment a month ago, I have been headache-free. A friend of mine had great success regaining her vision with his Macular Degeneration treatments.
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• Loss of central vision and most of peripheral vision
• Posted: 2007-11-13 01:35:17 By Mini S
• Hi,
  
  My fiance has RP and he lost all his central vision and 99% of his peripheral vision suddenly 7 years back. Back then the doctor told him to start leading life like a blind man with a cane and a guide, which upset him a lot and he still does not accept his RP to this day. From all the posts I read, people have gradual loss of vision over the years right? I was surprised how this happened to him all on a sudden. Will the CNTF trials help him in anyway? Will it improve his central and peripheral vision? Will stem cells transplant help? By when can we expect a cure for RP? I have accepted his illness but he is unable to, so I am desperate to find some answers for this. Kindly help me with this.
  
  Thanks,
  Mini
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• Update on CNTF progress
• Posted: 2007-11-12 11:42:03 By Carol C
• My brother hss had the CNTF implant in one eye since Sept. 21, and is having noticable improvement in visual functioning. Just last week, he noticed that he can see more than one word at time when trying to read to his kids AND.. he can see these words without his glasses! Also,when watching TV, he noticed he could see his foot crossed on his lap across his other leg. Before, he could not see anything in that area while looking at the TV. Both acuity and field of vision seems to be improving! This would fit with the hypothesis that these retina cells are not dead, but dormant, as has been observed in animal research. He has an unusual form of "inverse RP", with more cone cell involvement than rod cell, yet both are effected as he is "late stage". I am pestering him regularly for updates on his subjective experience, next formal testing in December. Carol
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• where to find trial data?
• Posted: 2007-11-11 13:50:04 By Drew C
• Hello everyone,
  
  First time posting on this website (well I am sure it's the first time. Can't remember lol).
  
  Been a reader here for a long time though! Also I am a 26 year old male and have Ushers Type 2, though I don't require a cane yet. Though things are not as easy as they once were. :(
  
  I have two questions which am I hoping someone might be able help me with.
  
  What websites can I check to read up on the latest results and data from the various trials ongoing? I am quite interested in the LCA trials they've commenced in May this year, as that line of research seems to hold the best chance of restoring vision I feel.
  
  Also I was hoping someone might know of any RP events or get-togethers in NSW, Australia? Seems all the activites are based in the UK or USA!
  
  I also wrote a kids book, as something to keep me focused in the meantime, but that can only keep me busy to a point. I would like to meet others with similar conditions if there is anything based here where I live. So if someone is from Oz like myself I'd love to hear from ya.
  
  Also if anyone is interested, I've included my website which shows a bit about my book.
  
  www.drewjcormack.com
  
  Anyway hope everyone is well.
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• Hope
• Posted: 2007-11-11 13:32:42 By Eric J
• I found a place where I am not blind. It is the GYM. I can run left weights and ride a bike. My weight is not an issue my healing is and to be a whole person is what I do. Try what I am saying My world is better becuse of the GYM. I think yours can change as well.
  
  Eric
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• lights and floaters /RP
• Posted: 2007-11-10 17:38:07 By Sandy H
• I am new to the board. I have RP. Is it normal to see flashing lights, and lots of floaters. I not only have that issue, but every day seems to be different. One day I see pretty good and the nexe things seem cloudy and blurry. Can anyone give insight on this issue. Thank You so much
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• Melatonin, Insomnia, and RP
• Posted: 2007-11-09 22:14:01 By Jonathan R
• I have always have trouble getting to sleep at night. My dad reported positive results from his use of melatonin supplements, so I decided to give it a try.
  
  I decided it would be a good idea to read Wikipedia's entry on melatonin before I took my first dose. I read to part about how retinal cells play a part in hormone circadian rhythm regulation, and I got to wondering how the degeneration of retinal cells might effect a person's ability to achieve normal sleep patterns as a result of disrupted hormone production, and if my life-long inability to fall asleep at decent time of night might have anything to do with the RP.
  
  Here's a copy of the primary paragraph of interest:
  "Production of melatonin by the pineal gland is under the influence of the suprachiasmatic nucleus (SCN) of the hypothalamus which receives information from the retina about the daily pattern of light and darkness. This pattern that entrains both the SCN rhythmicity and melatonin production occurs through recently defined pathways of non visual light detection. Light reaches the SCN through a subpopulation of inner retinal ganglion cells (intrinsically photosensitive retinal ganglion cells which are photoreceptor cells distinct from those involved in the visual system). These cells represent approximately 2% of retinal ganglion cells and express the non-visual photopigment melanopsin (1). The sensitivity of melanopsin fits with that of a vitamin A-based photopigment with a peak sensitivity at 484 nm (blue) (2). This photoperiod cue entrains the circadian rhythm and the resultant production of specific “dark” and “ light” induced neural and endocrine signals regulates behavioral and physiological circadian rhythms )."
  http://en.wikipedia.org/wiki/Melatonin
  
  So how many of you have sleep problems?
  
  I wonder if any studies have been done on the relationship between RP, meletonin production, and sleep patterns?
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• gene testing result
• Posted: 2007-11-09 08:25:16 By julia b
• I've just found out which gene is probably causing my R.P.I don't know if I feel better or worse really.Better now that I know for sure that I have a genetic defect and can stop looking at other possible diseases or being in denial,or worse knowing that it really is a gene thing and there is nothing I can do.Interesting though,I always wondered which little so and so was responsible!Apparently,it's an alteration on the 0RP1 gene.
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• confused
• Posted: 2007-11-08 15:20:20 By colette k
• hello, im 19 and i have just been diagnosed with retinitis pigmentosa. and im a little confused in what is going to happen.
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• confused
• Posted: 2007-11-08 15:20:11 By colette k
• hello, im 19 and i have just been diagnosed with retinitis pigmentosa. and im a little confused in what is going to happen.
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• Research
• Posted: 2007-11-08 12:45:50 By Elizabeth J
• I know this probably an unknown but I would like to hear what your doctors are saying about their guess on when there will be a treatment for RP. I know there a couple of promising research projects ongoing but just would like to know what you have heard from your doctor if anything or any researcher you might have spoken to that is estimating.
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• anything news from Pro Robin Ali
• Posted: 2007-11-08 12:30:17 By Mose H
• just want to ask u what happend with Robin alis trial when he injected stemcell in rp patient any good news aboutn the surgery
  
  thanx alot
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• to talk about this diease
• Posted: 2007-11-08 10:35:31 By dawn m
• i am a 28 year old woman who has rp and i am trying to raise two kids 9yrs and 19 months old it is very hard cause they dont understand why mommy cant read nthe books that they have. it is hard i am trying to help them understand i need help
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• to talk about this diease
• Posted: 2007-11-08 10:35:22 By dawn m
• i am a 28 year old woman who has rp and i am trying to raise two kids 9yrs and 19 months old it is very hard cause they dont understand why mommy cant read nthe books that they have. it is hard i am trying to help them understand i need help
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• RETINAL SURGERY
• Posted: 2007-11-08 04:49:22 By james n
• how did they put the camera?
  
  amazing...
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• ERG Results
• Posted: 2007-11-08 04:07:43 By Stephanie R
• Hello. I just got ERG results and wonder what they might mean. I am experiencing some loss of central vision acuity, difficulty in sunlight and somewhat in the dark, and a reduction in visual fields. I am 20/30 and 20/40 corrected but the glasses don't eliminate squinting and still a feeling that I cannot see print properly. Everything gets dim after I read for about 30 minutes. Reading or doing anything that requires closer vision is difficult but just looking around a room or driving seem to be just fine.
  
  My Dad and his brother were diagnosed with RP long ago but in a recent conversation, Dad (who hasn't seen an eye doctor in years) told me that he lost central vision first and had trouble in daylight. He has been almost completely blind since the age of 33. Dad's aunt was blind by 70 but this didn't start until later in life (we don't know what age). My grandmother was just light sensitive. My g-grandfather was blind but undiagnosed.
  
  My ERG report states: Fundus changes have a low amplitude electroretinogram for both rods and cones with a flat flicker fusion frequency. This represents some form of tapetoretinal degeneration. I also have been told my optic discs are pale and that my retinas have a peau de orange appearance.
  
  My doctor just says it is probably either cone-rod or rod-cone dystrophy and makes my glasses stronger which really doesn't help much and doesn't give any other advice. I keep wondering if there are protective measures I should be doing or if there is anything else to help the eye fatigue that I am now getting daily.
  
  I am planning to make an appointment with Dr. Stone (I live in Kansas) but in the meantime I wondered what an ERG with low results for both rods and cones and a "flat flicker" might imply if anyone here knows.
  
  Any ideas or suggestions?
  
  Thanks!
  Steph
  
  
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• Voting
• Posted: 2007-11-07 18:06:45 By Darran Z
• Hello All,
  
  I am just curious. Some of you may not have voted in an off season but just curious anyway. Did any of you vote yesterday? What are your experiences with voting? Was it electronically or paper ballot?
  
  Where I live we had electronic voting. So I used the "Large Text" option on the machine and that worked for me. However the contrast feature ****! Other than that, it worked well for me.
  
  Darran
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• Hello
• Posted: 2007-11-06 15:33:37 By Linda V
• Hello I am just joining this message board. I have RP with dominant gene, thus my entire family on my fathers side are afflicted. I have two sons both whom are affected. One is21 years of age the other16 years of age. I am the mother.
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• trials on cntf
• Posted: 2007-11-06 09:03:24 By leonor t
• Hello, I am Spanish and my English is not as good as iwould like but I do my best. My husbans is legally blind at his fifty (RP) I try to know every research related to this disease.I have read about people who are part of the trials with cntf that talk about their puile size and so. But my question is; Have these people experienced any improvement at their sight?
  Darran I admire your knowledge about RP. Investigation here, in Spain is rellay bad so please if you can help me with any information or research the in EEUU I will be very pleased. My e.mail is
  leotercero@telefonica.net
  
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• Cycling for Ushers
• Posted: 2007-11-05 12:14:05 By Pat B
• Hi Folks,
  
  I posted this on an older thread.
  
  I'm from Ireland, I'm 29 years old, I have Ushers Type II. I have recently began to develop a passion for cycling. I have heard it all over the past 10 years with regards to sports etc. on "You'll get hurt etc."
  
  I love sports. As much as I want to go back to the sports I used to play before I had to stop them or try new sports. I know in my own heart that I can't play team sports anymore.
  
  I run, swim, do weight training and play golf, with someone who watches my ball!! :o) But there are so many other sports I would love to participate in but I just can't.
  
  Cycling is my latest effort. Some of my friends are doing it and I figured, why not? I love a challenge. I've thought about it for some time now, weighing up the pros and cons and I decided to get a lend of a bike and try it out. I absolutely love it. I want to aim for something bigger in a year or so, a duathlon or triathlon!! :o)
  
  But, what I want to know is an someone who has Ushers, how do you find cycling on roads? Apart from the peripheral vision problems, i.e. can't see another cyclist beside you. Are there any tips, tricks or advice you can give?
  
  Many thanks.
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• Just an Update
• Posted: 2007-11-02 22:10:04 By Angela R
• I went a few weeks ago and saw my doctor. I passed all the tests they put me through so I don't have RP but they think I am a carrier. When the doctor looked in my eye he had never seen a carrier carry RP this way so I was referred to Dr. Brantely. Actually, he had never seen anything like what I have in my eye. They took pictures so they could use them for teaching purposes.
  
  I went today and shocked this doctor as well. They don't know what I have in my eyes. Large yellow patches, white spotting, deep dark splotching. Absolutely strange to them. My mom was with me and had her eyes checked. Our eyes are totally different from each other. My mom's father and brothers were diagnosed with RP. SO---the doctor is sending my pictures to some doctors in London to see where to go from here. He is wondering if my grandfather could have actually had Choroideremia and it was misdiagnosed. He said either way he thinks I am carrying some kind of eye disease. Any thoughts? I guess I'll have to wait and see.
  
  Thanks for Listening
  Angela R
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• Eyes
• Posted: 2007-11-02 22:01:43 By Mary C
• I went to the doc. today I was told that my RP hadn't progressed which is great news. But my doctor told me that all my vision problems werent from RP. He said something about my eye being 1/3 of an inch to short which he explained would make me very farsighted, I was also told that I had a really bad lazy eye. I was wondering if anyone knew if a "short" eye could be fixed or if any doctor would even try becase of the RP? Or if anyone has ever herd of it? Any information anyone could give would be greatly appreciated. Thanks a lot
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