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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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• CNTF...NT-501...RP.
• Posted: 2009-05-29 18:10:04 By sergio g
• hi, I said earlier stages II-III agupadas ok! sorry.
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• NT-501..CNTF...RP;
• Posted: 2009-05-29 18:03:25 By sergio g
• Hi staff, I believe it was presented the clinical results of NT-501 .. .. CNTF RP, for the phase II and phase II will not grouped as I-III pensava.seguindo this line, then we would have to phase III in scale mudial! or not! seems that what was clear is that CNTF has effects in improving the thickness of the retina until the time ok! I would like to make a good news here in Brazil, 5 patients had implanted adult stem cells from marrow bone, and the patient, female, FF, 22a, only perception of light, after 12 days, see the letter E to 20 cm away, all reported increased sensitivity to light; carefully; sergio gomes Soares.
  
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• Darren Z or Andrew B
• Posted: 2009-05-27 20:21:26 By Francine M
• Darren, could you please email me? Bethm350@sbcglobal.net
  I just received word from the EEOC and could really use some advice from a fellow RPer.
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• Visiting a Low Vision Specialist
• Posted: 2009-05-21 17:08:31 By
• Hello All!
  
  I was recently diagnosed with RP. The doctor did not do much else with me (I guess b/c there is nothing that can be done). I was in shock when the doctor told me, and she really did not give me much helpful information. If not for the internet, I would be lost.
  I was wondering if going to see a Low Vision Specialist would be reccommened. My vision is not bad yet, but I do have problems bumping into things, and of course dim lit or dark rooms. I still have my driver's license, just don't drive at night. Thanks for any information!!
  
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• Extra money ....
• Posted: 2009-05-21 14:12:13 By Bradley C
• Hey guys, I was curious if any of you guys have been able to make some extra money at home, in a legit way. I am not wanting to get rich or anything, just a couple hundred dollars a month. I am not looking for any fast cash ideas of anything, just something to pocket $200-$300 a month.
  
  Any help is greatly appreciated.
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• cntf
• Posted: 2009-05-15 14:54:59 By racer x
• Thank you for your interest in Neurotech. Please check back after May 29th!
  
  
  From:
  Sent: Thursday, May 14, 2009 7:26 PM
  To: contact
  Subject: ??
  
  
  
  Hello,
  
  
  
  I was wondering if you could tell me when the results from the CNTF trial for RP will be announced. I thought i read on the 5th of May. We at the FFB website are anxious!!
  
  
  
  Thank-You
  
  
  
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• CNTF;RP
• Posted: 2009-05-14 21:11:25 By sergio g
• darran Hello, I think the effects of CNTF showed rescue at cones mainly, benefiting those dystrophies which affect the macula! what you think of that! a hug;
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• UV and RP
• Posted: 2009-05-13 08:19:52 By cap b
• Having RP I've always been told to wear the best UV block sunglasses I can get. Now it has been brought to my attention that there seem to be no studies linking UV to progression of RP. Anyone able to direct me to articles etc. that might explain this. The only thing I can seem to find is the often repeated line "Wearing UV protection sunglasses may help slow the progression of retinitis pigmentosa". But nothing on why. Avoiding UV exposure has been a constant in my life for 20 years and now it appears there is no reason. Thanks.
  
  Confused in Nevada.
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• Going to Bascom-Palmer
• Posted: 2009-05-11 12:40:06 By Janet B
• Im going to Miami to visit the Bascom-Palmer Eye Institute this Friday for an appointment with their RP specialist. Has anyone else gone there for an appointment and can tell me what to expect? I'm excited about possibly seeing what new age treatments are available and if there is anything they are willing to try on me. I have one eye that is correctable to 20/100 (so not really all that good). So im willing to experiment. Thanks.
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• Any News on CNTF ????
• Posted: 2009-05-07 23:54:07 By Margaret M
• Has anyone heard anything new this week on the CNTF trial. I was hoping that the results would be annouced yesterday or today. Does anyone know which meeting the results were going to be announced at ???
  
  Thanks,
  Margaret
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• Posted: 2009-05-05 01:24:48 By Karen S
• hi my name is Karen. i have not been here in along time. i am 32 . Live in Utah and have RP. I have always been the only one that had it in all of my family. My mom who is 54 just was told that she has dominant RP ans is a carrier. I have three daughters that I am worried that they are going to get it. IF anyone knows anything about this please let me know. Also any one that just wants to talk or say hi, its always nice to talk. Thanks
  Karen
  k.summerhays@yahoo.com
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• Posted: 2009-05-02 12:28:15 By elizabeth j
• 
  Hi my name is Elizabeth and my dear friend Eleanor has this disease, she is 75 and is now totally blind. She would like to talk to others.
  She is feeling very depressed at this time.
  
  Also, has anyone heard of a hand held GPS that can be programed to the special needs of a blind person??
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• Low vision community would be more accurate and ehre is the link for the CBS 60 Minutes
• Posted: 2009-04-20 14:48:47 By Alvaro G
• Hi again:
  After thinking deeply about it I musts ay that the idea would be a low vision community, would include dating but I think is much more useful if becoms a community for low vision people where you can look together for a job, findmfriends in your area, share thoughts, write blogs, videochat or vocie chat, well you get the idea, I am excited about it, today my ophtometrists aid is an awesome idea, but I need funding, investment, partners, well we will see.
  Oh and if you want to watch an awesome interview with a guy with RP visit:
  http://www.cbsnews.com/video/watch/?id=4937742n
  
  
  Have a great day.
  Alvaro.
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• Low vision Dating site
• Posted: 2009-04-18 18:43:37 By Alvaro G
• Hello all:
  I am Alvaro and post here sometimes.
  I have been thinking for years to create a dating site, due to the fact that at 34 I remain single and I suppose many low vision people like me do too, I was wondering if anyone would be interested in helping me create this low vision dating site, requires some cool technology so we would need some investing in there and I also want to know if anyone would join.
  Would be an unexpensive one, perhaps even free if we find the right advertising.
  Is just an idea but boy would be cool.
  You can email me at alvarorp30@yahoo.com or add me on Facebook by typing Alvaro Alvarito.
  Have a wonderful weekend.
  Alvaro.
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• Darran Z
• Posted: 2009-04-15 16:12:34 By Peter F
• Hi Darren, along with many of my contacts i lost your email when my old computer gave out. Send me your email address. I am marlin04@verizon.net. We can catch up.
  I hope all is well with you. My son is doing well in spite of four operations on his torn retina. His good left eye is still stable and has been for 3 years. His right eye has no vision due to the torn retina and the 4 operations he has had which has led to a large cateract in that eye. The first three operations failed but I found a clinic in Boston that specialised in failed retina operations and the fourth operation may have worked using their procedures. His doctor doea not want to remove the cateract because of the multiple operations and trauma. He said we are keeping the bad eye as a spare.
  Cheers
  Peter
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• 60 minutes and Steve Wynn
• Posted: 2009-04-15 14:31:19 By Denise S
• Did anyone catch 60 minutes this weekend where Las Vegas Hotel/Casino Owner Steve Wynn said he has RP? I only heard that he announced this but missed the show. While I am sad that he has RP, it always raises my spirits when someone famous(read rich ) has something that will get attention and funding for research. Any information that you have about his appearance would be appreciated.
  Denise
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• Is tostittin or retntab or pagnatrx a homeopathic cure for RP
• Posted: 2009-04-02 18:25:09 By phil E
• These people on the internet say take this and will help. anybody have any comments. they are all listed in the search engines flashpuff1
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• Early 1970's Dr R V Hills Rp research with dmso
• Posted: 2009-04-02 18:18:08 By phil E
• Looking for the group that went to Longville ,washigton.1974 and on.Sened me a message that you are parrt of the group at flashpuff1@iwon.com
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• CNTF results for amd, good news.and rp soon :)
• Posted: 2009-03-28 08:54:26 By joseph M
• I have just read that the cntf trial for amd is just released and the results was encouraging very much. The results for the RP trial are expected on 6th May 2009. and i have hope that they will be encouraging just as well. I got a question that many i think got the same but maybe darranZ can give us some more insight with his expertise in the subject. given the results of the trial are ok, what phases will be left to do since the trial of RP was for phase2/3 combined. i guess the final question of many of us is when will the product be available commercially given the trial has been now also fast tracked.
  who knows 3,4 ,5 years maybe :)
  thanks
  Hope
  
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• Avastin experience
• Posted: 2009-03-26 23:04:29 By
• Hi everyone. I was wondering if anyone had experience with Avastin injections into the eye. I've been warned about side effects such as retinal tearing and infection. Thanks for your help!
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• Braille
• Posted: 2009-03-26 10:08:24 By Brian O
• Hi All,
  I just read an article stating that fewer than 10 pct. of blind Americans read Braille (link: http://news.yahoo.com/s/ap/20090326/ap_on_re_us/fea_lifestyles_braille_literacy)
  
  My 5 year old son Dylan has Usher Type 2a with mod-severe hearing loss since birth and has worn hearing aids with great success since 8 weeks old attending an auditory-oral program through the Clarke school until this year. He is currently in mainstream kindergarten doing well. His vision has not been impaired yet.
  
  What are people's thoughts on getting him braille reading training or your own experiences in this area? Is technology far enough along to remove the need for braille? The article suggests otherwise.
  
  Thanks for your thoughts,
  Brian (ohara_brian@yahoo.com)
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• Vitamin A dosage
• Posted: 2009-03-25 17:22:51 By erika c
• I've been reading Vit A 15,000 has been recommended for RP. I have pills that are 8000 each, would you take 2 a day, or can going over the recommened dosage be hurtfull.
  Help Please!
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• tough time
• Posted: 2009-03-23 21:20:11 By Megan M
• Hello all...haven't posted on here in about a year but feel the need to reach out a bit. Typically I am your happy go lucky well adjusted girl with RP. The last week or so, however, I am struggling. Since being a teen and facing the whole not driving part I have had very few times when I thought "man, I'd really rather not deal with this!" This week I had to admit to myself that my normally vibrant nightlife needs to come to an end. It is too much strain on myself and friends to play guide for me. Any tips on dealing with this new life adjustment? I realize losing that part of my life is minor in the big picture but it's none-the-less hitting home for me. Tips please!
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• How to contact Rebecca Alexander???
• Posted: 2009-03-21 18:01:31 By Alvaro G
• Hi all, I saw the interview on the Today Show with Rebecca Alexander and her brother Peter.
  I thought she is the most impressive woman I have seen and I would like to conatct her and show her my support, does anyone know how to contact her? Can someone tell me her website or email address???
  I hope all of you guys can watch the interview.
  God Bless.
  Alvaro.
  Email: luckyguy135@hotmail.com
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