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• hello
• Posted: 2010-02-15 19:00:48 By Dana J
• hi my name is dana. I'm 19 years old i was diagnosed with Rp when i was 15. i live in michigan and i'm a freshman at Northwestern Michigan College.i no longer drive. I have no night vision and side vision. I'm starting to lose my color vision. I'm new to the message boards and i guess i'm just looking for any advice dealing with living with RP as a college student or any new information on RP.
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• question
• Posted: 2010-02-13 22:04:31 By barbara d
• John Hopkins discovered my eye disease while I was in the Air Force. I was lucky enough to retire prior to it getting worse. The hard part was driving to work in the dark. So many times I could not see the lines. For me I can not drive in the rain or when the road is wet. Fog is also a problem for me.What really gives me problems is I have black spots in both eyes that flicker, and it seems to be where the blind spots are. Very hard to go outside in the beginning as I see gobs of flashing black dots. They never go away. If they are not black they are while flickering. The doctors don't know what this is though they said they have'nt studied RP enough as there are many many different types of rp.Can anyone relate to any of this?
  
  
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• Saffron
• Posted: 2010-02-13 13:35:28 By Thomas B
• So I hear that Saffron is the new supplement for RP. Has anyone heard this? Where can we get it and at what doses should we take it?
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• Mexico stem cell treatment
• Posted: 2010-02-07 12:16:11 By Steve B
• I have a friend's bother-N-law who has diabetic Diabetic retinopathy. He was legally blind and went to Mexico and received an injection of embionic stem cell. Six months later, after the treatment, he as improved so much that he went to get his driver's license.
  
  Has anyone heard of or tried foreign stem cell treatments? I would also like to know what I should be looking out for? I know there is a lot of unscrupulous people out there.
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• Need Intervention from FFB
• Posted: 2010-02-02 16:23:26 By Peter W
• As we find out the great research with optimism on various forms of potential cures on rcs rats, we humans need these research studies to quickly hit the mainstream clinical trials soon. For the regulatory agencies here in US and Europe, there needs to be some urgency to see through these treatments quickly. It is painful to see how long the ACT trial takes to go through the approval process. FFB - as part of your strategic plans in 2010 and beyond, please design plans to see a lot of these come to fruition and soon. Furthermore, please plan to proactively push some of the phase III potential cures (i.e. Neurotech) to set plans to quickly move from trials to market, if the results are positive. We need some intervention.
  
  Every day counts....As some of us are painfully aware, a gradual vision loss is painful. Let me know how I can help you get some of these research into market soon.
  
  Help us!
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• Looking for a phone that's able to enlarge texts (verizon wireless)
• Posted: 2010-01-28 23:08:37 By Patrick C
• It's about time to renew my contract with Verizon Wireless. I just recently started texting. The phone I currently have has no options to enlarged my text messages. I use a magnifying glass, but I still struggle quite a bit. Especially if I'm outside during the daytime. I went to my local Verizon store, but they were of no help at all.
  
  I know there are phones that will read your messages to you, but I'm not interested in that feature as I don't like people being able to listen in on my conversations, and also, sometimes I'm in quiet, public places. I also know that there's phones where you can change the background and text color (black background with white text). My brother (who also has RP) has one of these phones, but his is pre-paid. And I think that phone is only available for pre-paid.
  
  I'm mostly looking for a basic phone, but that also takes pics and videos. I don't care about internet or anything like that. Just a good phone that makes calls, sends/receives texts, and takes pics and vids. A qwerty keyboard would be a plus, but not a must.
  
  Any help would be greatly appreciated. I figured this would be the best place to ask since I'm sure some of the members would have something like what I'm looking for.
  
  Thanks in advance.
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• the london project
• Posted: 2010-01-26 03:23:23 By tan b
• anyone knows about the london project going on.
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• SOS
• Posted: 2010-01-25 18:58:37 By courtney j
• Hello to anybody who reads this. My name is Courtney I am the mother of two beautiful boys. Kane is 2 and Korben is 1. Kane was diagnosed with RP July 2009. I was noticing Kane was falling short of some of the benchmarks in the parenting books, I wasn’t really worried to much about block stacking or silverware using too much because what kid really does? But he was really cautious and just never really made eye contact of course I brought this stuff to the pediatrician. Well any how after being told by plenty of doctors and an optomologists that I was in fact an over reactive mother, I decided to go to a children’s hospital in the next state. With in fifteen minutes the children’s optomologist told me my son was far sided and legally blind and then he asked if I had the time to do stay and do further testing. He asked me if he could put Kane under Anesthesia and do some light testing in the back of his eye so he could see Kane’s retina. I agreed and by that time was in shock having went from being the “over-reactive mother” to the mother of a two year old that was going blind. After the test was over the doctor told me to get him to a school for the blind, file for social security, and get him glasses. They also said his brain might be degenerating. Well so far I had a u-haul donated to me. I moved me and my two sons to salt lake so Kane could be in the early intervention program. He is supposed to start preschool and the school for the blind in the fall. I’ve been laid off from my job and now im being evicted form my apartment because I can not come up with rent. I need help form anyone or if anyone knows of organizations that help with rent, please let me know. I’m having a hard time staying positive.
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• RP Online Radio show can be heard here
• Posted: 2010-01-25 12:23:08 By Alvaro G
• Hi, this is Alvaro, I am soooo happy with my Hopetalk Radio show Online, I want to thank all my listeners, we are raising awarness about RP and I am so happy doing these shows.
  You can listen to my shows here:
  http://hopetalk.podbean.com
  We will find a cure for RP soon, if we stand together!!!
  Have a wonderful week.
  Alvaro
  Email: alvarorp30@yahoo.com
  luckyguy135@hotmail.com
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• Dr. Per Otte Micro acupuncture
• Posted: 2010-01-19 12:08:19 By Rod S
• I am 39yo with RP. I am considering micro acupuncture for treatment. I spoke with Dr. Otte to discuss treatment, nutrition etc....Dr. Otte told me that the Foundation for Fighting Blindness is going to interview him. As he put it "the FFB is coming to see me in March".
  So, I tried to contact the FFB to confirm or deny his statement. I tried several times via the automated system with no luck. Can you help me or know someone who can help me verify this information. Thank you in advance.
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• Micro acupuncture
• Posted: 2010-01-13 22:45:59 By Rachel S
• Has anyone heard about micro acupuncture as a treatment for RP and other degenerative diseases. Just read a lot on it and it looks promising. I know the doctors all say there are no cures or treatments for RP but I'm not ready to rule out alternative medicines as an alternative to treatment for my husband's RP. Any info would be great. Thank you!
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• Happy New Year!!!
• Posted: 2010-01-06 14:46:18 By Alvaro G
• Hi, this is Alvaro wishing FFB and all its members and fellow RPers a wonderful 2010!!!
  Listen, I did my first talk show last Satruday night and next one is all about RP, here are the links:
  This is the Link to my Radio Talk Show that will start Saturday 10 pm ET: Hopetalk:
  http://s2.myradiostream.com/18082.htm
  And if you cannot listen live on Saturdays you can listen here:
  http://hopetalk.podbean.com/
  
  
  Hope you tune in!
  God Bless You all.
  Alvaro.
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• STAY HOPEFUL LINDSEY!!!
• Posted: 2009-12-31 13:59:05 By Alvaro G
• Hello Lindsey:
  First of all Happy New Year to you and your family, hope 2010 and this new decade brigns happiness and all you want to you.
  Well, my name is Alvaro and I am 35 and was diagnosed with RP at 20.
  I was going out with someoen and she didn’t understand what I was going thru so we broekd up and I moved on.
  Not everyone can undestand whatw e dela with everyday and night, some can be taught to understand but others prefer not to help and are selfish about it, you need to discover if your boyfirend really understands or wants to, only in tough times yous ee the quality of the person your with, so its time for him to step up to the plate and prove you his love with actions, then you will know if he si worth your lov eor you need to find someone who has a good heart and true love for you!
  I think to try make him understand your challenges with RP, you should bring him with you either to see a retina doctor thatc an explain to him everything, or go together to a conference of Foundation Fighting Blindness where he can get educated on what is RP, how it affects your life and all that…
  He could also join this forum and psot a messag askign for someone who DOES NOT HAVE RP but deals with someone who does, how that person is helping the RP person and how to better understand that person.
  Lindsey, soemthing that your boyfirend needs to understand is that you need his support and help now, and you would not ask for it if you did not need it.
  I alsow ant to offer you my friendship, my email is alvarorp30@yahoo.com
  
  And now let me give me a URL of a wonderful suppor group Online where you will find decent people like us:
  www.mdjunction.com
  
  I also can give you ideas of hwo to elarn to live a better life, trust me I have been there and I struggled a lot too and now at 35 I look at life with total hope and optimism!!!
  God Bless You and good luck.
  Alvaro.
  
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• How to get started looking for help?
• Posted: 2009-12-30 00:19:00 By Sara S
• My dad has had RP for years now, it is getting to the point where he cannot see much at all. I would like to get him in to see someone who can really help him. So far, eye doctors have seemed inexperience with RP. Anyone have suggestions for who to go to in Michigan?
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• Posted: 2009-12-29 14:42:30 By Lindsey S
• hi everyone, my name is Lindsey, im 19 and was diagnosed with RP a year ago. I have restricted myself from driving at night and am struggling with feeling helpless. My boyfriend of 3 years just does not seem to understand the set backs of my disease. Does anyone have any unique or simple ideas on how I can help him to understand my daily struggles? I feel as though no one I know has a disease such as this one that completely alters your perception of life and the world... none of my friends nor family will ever see the world through my eyes as I see it- but I still wish I could help my boyfriend to know that when I say I can not drive at night I really do mean it, and when I say I need help outside in the dark from the house to the car, I really do mean it.
  basically he is unsympathetic to the fact that I live day in and day out with this disease and no one to relate to... help?
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• Online Talk show about RP and Hope coming soon
• Posted: 2009-12-28 20:22:49 By
• Hi everyone:
  I am Alvaro and I write here often, I want first to wish you all and the guys at FFB a very Merry Christmas and a very awesome Year 2010!!!
  I decided to start my own Radio Talk Show Online and will start this coming Saturday and all Saturdays at 10 Pm ET.
  I will upload the shows everyw eek to a website where everyone can listen to it at anytime.
  The show is called HopeTalk:
  To lsiten live, must be Satudays at 10 pm ET here:
  http://s2.myradiostream.com/18082.htm
  
  And to lsiten anytime of the year you will be able to do so here by signing up:
  http://www.podbean.com/user-profile-view?uname=hopetalk
  
  Hope you enjoy it and Happy New Year to everybody here!!!
  My email is: alvarorp30@yahoo.com or luckyguy135@hotmail.com
  Alvaro.
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• Stemedica
• Posted: 2009-12-16 14:04:21 By Chip D
• 
  Has anyone heard of a stem cell research group by the name of Stemedica (http://www.stemedica.com)? They are headquartered in CA and apparently are doing quite wonderful things with treatments for RP patients (currently only in Moscow). I believe they are slated to begin the FDA process sometime in the next year. I have been surprised not to be able to find any notice about them on FFB since their line of research looks so promising, and especially given FFB's recent notice about other advances in this area research. Anyway, any insight/information would be appreciated. Thanks, Chip in NJ.
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• New to message boards, old to RP
• Posted: 2009-12-08 11:35:26 By Linda D
• My name is Linda, live in north Ga. I was diagnosed with RP in 1997-how time flies!! I took the news pretty bad back then, but 12 yrs later and thank God (literally) I still have central vision. It has worsened from '97, yet pray daily for degeneration to stop. You know, loosing vision
  at 41-after years of going and doing as you please
  is pretty hard to adjust to. I'm a single mom and
  my youngest is graduating HS this year, then I will be all alone up here. I have pondered the idea of trying to locate a local chapter, but what
  would they do? I've always been so independant, I hhesitate to contact them. Any comments on what the locals do would be appreciated. God Bless you aall, Linda
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• How to prepare your child for the future
• Posted: 2009-12-07 14:44:53 By Patricia M
• Hello; my 16 year old son was recently diagnosed with RP. I am curious as to what kind of careers are available to him as he gets older and his vision worsens? Since college is right around the corner for him, I would like to help him find something he can major in. He really loves math, and I always told him he should be a CPA. Would this still be possible for him?
  
  Also, any tips in helping him to prepare himself for what is in store for him?
  
  Thank you.
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• Looking for other with rp in the southeast kansas area
• Posted: 2009-11-29 03:46:55 By Jessica A
• Hello my name is Jessica and i have Retinitis pigmentosa i am only 23 i am looking for others who live in the southeast kansas area that also has rp you can email me at almondj02601@hotmail.com
  thanks Jessica
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• What do you think?
• Posted: 2009-11-18 18:00:33 By Luis G
• Hi everyone!
  
  I know this stuff has been posted here before. I would like to know your current opinion about this center and its treatment...quack? This Center is located in Germany, it is suposed to be a serious center.
  
  http://www.xcell-center.com/treatments/diseases-treated/macular-degeneration.aspx
  
  Bye,
  
  Luis
  
  
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• Looking to make friends with RP in NY/NJ
• Posted: 2009-11-16 15:35:07 By
• Hi, my name is Alvaro, I reside in S. America but I am moving to the US soon.
  I have a trip planned for March, 2010 to NY for business and will stay there for about 2 months.
  I was wondering if anyone in the NY or NJ area would be interested in starting a friendship with me.
  Maybe we cna hangout and talk about our RP when I go there.
  I think we all need someone tot alk to about our RP sometimes.
  My email is: alvarorp30@yahoo.com
  Thanks.
  Alvaro.
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• cataracts
• Posted: 2009-11-14 08:11:39 By Dianna U
• has anyone had cataract surgery after being diagnosed with RP and was it beneficial?
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• Implantable Contact Lens (ICL)
• Posted: 2009-11-10 22:12:17 By Jason C
• Hi, this is my first time posting msg on this board. i am from Singapore and i have RP since a kid and fortunately my vision is still good for me to do things independently including going out at night. of course, there are a few restriction like going to nightclub and cinema alone where i will be totally lost. i have been wearing contact lens and specs since young and recently came across this ICL procedure. i am not sure if anyone has even consulted a doctor on this and if it is suitable for patients with RP. Since this is like placing a permanent contact lens into your eyes and the procedure can be reversed easily, i am not sure if this will be good for the eys. apparently, i have consulted doctors for LASIK and none of them advised for it. i wonder if this can be an alternative to Lasik.
  Regards,
  Jason CHong
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• shahzad khan special edcuational society
• Posted: 2009-11-10 12:47:57 By shahzad k
• MR. & MRS. SHAZAD ALI heads of a courageous family, whose four out of five children have gone blind due to a mysterious in born eye disorder.
  
  The heart-rending tale of one Mr. Shahzad Ali makes life meaningless for the entire family whose four children Ehsan Khan, 17, Zeeshan Khan, 16, Aroosa, 13 and Nadia, 11, have gradually lost sight leading to complete blindness due to innate genetic ophthalmic disorder called retinitis pegmentosa.
  
  
  However, his tow daughters, the elder one Aroosa and the younger on Nadia have still some life in their eyes with 50 percent and 25 percent sight still intact respectively, suggesting that younger one is losing her sight faster than her elder sister.
  
  On the other hand, Shahzad Ali’s fifth child and the middle one Usman Khan, 14, does not suffer from this strange disease, thus enjoying completely healthy vision, Shahzad Ali had married his first cousin in 1988. However, the strange eye ailment among the children is not an inherited disease because neither parents nor their families show any history of this ophthalmic disorder.
  
  
  Shahzad Ali, 36, said his entire family is going through a severe mental trauma owing to the inherent visual disorder among his children which brings misfortunes and miseries with every passing day, thus making life meaningless for the whole family. “It is extremely painful to see the children hitting the walls every now and then. As the children are growing in age, their necessities of life are also increasing who are compelled to lead a wretched life.
  
  
  We were very worried about the future of the children because it is difficult to seek matrimonial matches for normal children, not to speak of blind children,” he narrated his tale of woes. He said he had been running from pillar to post for the last several years for the treatment of eye disorder of his children, adding he had visited major government and private hospitals for seeking treatment against heavy fees.
  
  
  According to him, as he quoted doctors as saying that researchers in the US have claimed ease called Retina after conducting successful experiments on rats and other animals.
  
  
  The disability of his children forced Mr. Shahzad Ali to think about establishing an organization for the betterment and welfare of disabled children especially the blind children. The establishment of Shahzad Khan Special Educational Society is to fulfill this mission. Our Society is successfully running a Special School namely “S S Khan Institute for the Blind” where blind children are taught with modern technology using special equipments like Perkins Braille Machines and computer programs. The children are also engaged in vocational training to build confidence.
  President of the Organization
  
  Contact :(+92-42)35001742 (+92-42)36296069
  
  Mobile Num: (+92-322-4688960) (+92-302-8488960)
  
  Address: 37 Khizar Park HabibUllah oad Ghari Shahu Lahore(Pak)
  
  E-mail: ss_khan2000@yahoo.com
  
  sskhan_2000@hotmail.com
  website: www.shahzadkhansociety.org
  
  
  
  
  
  
  
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• NJ
• Posted: 2009-11-07 00:26:24 By Mani V
• Hi All,
  
  Does anyone know of a good Retina specilist in NJ. I am a RP for long time.
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• gene therapy?
• Posted: 2009-10-26 23:19:08 By JACSON M
• what can i say.....any news is great news..the only thing is whats taking so long for any working treatment,do y'all think its a money thing
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• Posted: 2009-10-26 14:22:27 By Lindsey S
• Hooray for gene therapy!!
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• How real is gene therapy?
• Posted: 2009-10-25 20:15:36 By Brian E
• Obviously the last stuff on the news is wonderful. But I noticed that the trials were done on fairly young people. Is this going to be something that's only going to be able to benefit very young individuals or will folks that are 20, 30, 40yrs old able to use too?
  
  I hope they can spread these results to people with RP and get something out to the public in the next ten years.
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• Posted: 2009-10-23 00:28:00 By JACSON M
• i really will love to meet ppl with RP cuz i had this sense i was 8yrs old n now i'm 35yrs old my email is jacsonmoore3@gmail.com im there all the time.the doctor said i will be blind by the time im 44yrs old,but who can believe n the doctor d's days,so i got a 2nd doctor to tell me its not going to get any worst then what it is.those doctor are in Cali.i'm in Decatur,Ga now so i need 2 find a new doc.i would love any feed back from u guys..til then keep ur head up n GOD BLESS
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