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• Questions about CNTF
• Posted: 2007-11-26 11:35:07 By Tammi M
• Hi, my name is Tammi and I just joined this message board today--it seems like a wodnerful resource. My mother is 67 years old and suffers from RP. She has been completely blind in her left eye all her life and has had no periphel vision in the right eye for many years. Over the last couple of years she has been progressively losing vision in her right eye. She is now at the point that the vision loss is really affecting her quality of life. We are desperate for a treatment or anything that can possibly improve her vision and/or quality of life. I know very little about CNTF--can anyone point me to the most comprehensive info on this treatment. Also is it true that CNTF is in the clinical trial phase and that all trials are closed? Does anyone know what trial phase CNTF is in?
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• Advice
• Posted: 2007-11-25 18:34:12 By Luis G
• Hi fellows,
  
  At the beginning of this year, when I was diagnosed with Cone-Rod Distrophy I felt so sad and confused. I had just graduated and obtained a Ph.D. in Robotics and Automation in Mexico City. I remember blind people walking by the Mexico City's streets, getting on and off the subway by themselves, crossing the streets and at that time I really was surprised of their capacity/ability to evolve by themselves with practically no aid, that encourages me to keep going ahead. Fortunately I found this site with very nice people whom I have learned so much and have been very willing to share your experiences with me, THANK YOU ALL!
  
  Well, the main purpose of this post is to ask you advice. At the beginning of this year I had 20/40 VA in each eye, then, I made changes and adapted myself to the new situation, and I thought with this VA I’m able to do what I have to do with no major problem (even I started to rely in my peripheral vision with success). However, my peripheral started to decrease and two blind-spots appeared at each side of my visual field in addition to the bull’s eye-shape central blind-spot. Almost a month and a half I visited an optometrist and told me that my VA was 20/80 in each eye. Since then, I feel that my VA has deteriorated a little bit more. Now, concerning to my job, I really feel insecure. I have obtained funding from the government and the private sector to carry out two projects, one related to basic research on telerobotics and the other one related to the industry. As you can see, the second project implies more responsibility and is more demanding 'cause I’ll have to visit the field. The question is: ¿should I tell my boss about my situation or just wait until my vision is really bad and quit? ¿What do you suggest me? I studied so hard to work on what I’m doing but life is very nonlinear and now I have to see what else to do for living.
  
  Please accept my apologies if I do not respond rapidly. When I get home all what I want to do is not to read, I prefer to attend my wife and my three years old boy.
  Luis G.
  
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• CNTF
• Posted: 2007-11-23 15:54:14 By HAMZA A
• CAN SOMEONE EXPLAIN TO ME WHAT IS CNTF ?
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• Living with RP in Pakistan
• Posted: 2007-11-22 04:39:37 By Salman H
• Hello.
  My name is Salman and I was diagnosed with RP around 24 years back when I was aged 9. Since then I have learnt to live and cope with it. However, more recently I feel that my vision has impaired further. Wanted to know whether there is any progress on its treatment. I heard about a Dr. Nolan in USA. Is he real and does he treats RP too. Also, is there any RP community in Pakistan to which I may subscribe.
  
  Best regards
  Salman
  Email. salman.haq@pk.ey.com
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• want get information
• Posted: 2007-11-22 00:34:17 By Detzi J
• Hi everyone,
  i'm living with Retinitis Pigmentosa, i want to know abot ECT-CNTF, how it work n how i get implant? Is it take grands?Will i get big surgery?
  Thanks for your attention
  Best regards
  
  Detzi
  detzipatricia@yahoo.com
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• want get information
• Posted: 2007-11-22 00:32:42 By Detzi J
• Hi everyone,
  i'm living with Retinitis Pigmentosa, i want to know abot ECT-CNTF, how it work n how i get implant? Is it take grands?Will i get big surgery?
  Thanks for your attention
  Best regards
  
  Detzi
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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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