Please login to post a response.

• Need a pep talk
• Posted: 2007-10-04 08:11:54 By Janice K
• I'm a 51 year old pediatrician and I've resigned from work in the clinic because I just don't see right. My working diagnosis is cone-rod dystrophy--atypical because my central vision is good. I have a lot of trouble seeing contrasts especially rashes and throats in the clinic. Just feeling really sad. I'll be teaching 1st and 2nd year medical students, but it won't be the same as seeing patients. I've just been having eye trouble the past 5 years, and recently my ERG is worse. I want to leave while I'm still safe for my patients. Requesting kind words. Thanks much. JK

• Re: Need a pep talk
• Posted: 2007-10-04 09:04:57 By Alisha A
• Janice,
  I also have cone-rod dystrophy (I'm 35yrs old). I'm sorry that you're having so much trouble. I recently had to resign from my job as an interpreter for the Deaf b/c I just felt like I couldn't give 100% to my students. Please email me when you have time at alishadadkins@yahoo.com. I think that talking to someone who shares your problems really helps. God Bless! :)
  Alisha

• Re: Re: Need a pep talk
• Posted: 2007-10-04 09:17:56 By Susan E
• I have a daughter 9years old with Cone-Rod .
  We found out when she was 2years old . I
  would like to talk . My email address is
  susandevans@comcast.net .
  

• Re: Need a pep talk
• Posted: 2007-10-05 06:18:58 By LINDA N
• Hi Janice,
  I am a 42 year old mother of 2 beautiful girls, and am legally blind.....It ****! Not a day goes by that I don't lament my low vision, but also not a day goes by when I don't smile at something wonderful about one or both my darling girls. Also, not a day goes by when I don't stop and think that I am lucky to have had my better vision of the past, and the existing vision I have left. One of my daughter's kindergarten friends, a lovely 4 year old, has lost one eye, and has extremely low vision in the other....while my daughter learns to identify the alphabet with Letterland, her play mate learns brail on ther 'special computer'. It is when you reflect on those less fortunate than yourself that you realise that, whilst life is not perfect, you have been dealt a better hand than many!
  I know that having to give up something you are passionate about due to your failing eyesight really hurts, but, as cliche as it sounds, you are fortunate to have pursued your dream for as long, and successfully, as you have. You will find other ways to fulfill your passion.
  My heart goes out to you, and I understand your grief.....because that is what it is...You have lost sonething dear to you, and will (most likely) never have it back.
  I wish you well in your future endeavours, and hope that you find a new source of joy to replace your clinical work.
  Kindest regards,
  Linda Nancarrow.

• Re: Re: Need a pep talk
• Posted: 2007-10-05 09:02:26 By Janice K
• thank you all very much.

• Re: Need a pep talk
• Posted: 2007-10-31 12:48:40 By russ r
• Hi, Janice
  Just saw your appeal to the FFB contingent. Great networking organization, and somewhat of an alternative to group meetings.
  I've been fighting several eye problems-dry ARMD, glaucoma, PVD's. Because you are an MD I assume you've had a good appraisal of your conditions. I've had many such assessments, each telling me I'm 'early', 'relax', 'cope'. Since I'm also a scientist, my solace is in researching for something to give me hope. Fact is I'm taking it upon myself in several areas to push for support for all of us to get solutions. I think there is an answer for each of us, to make us better, and must believe that to maintain my hope. I sincerely wish you to find that same mind set. As for support, I've even appealed to Oprah!! Thus far no responses, after several requests. Apparently her Dr. Oz is not equipped or perhaps not interested in our eye issues. I'll keep pushing. Don't lose the faith, because of safe sided comments about your eye prognosis by the people who are treating you. Being an MD, you, too are a highly skilled scientist and can do more to press on these eye issues than many of us lay people to the medical profession. russ r.

• Re: Re: Need a pep talk
• Posted: 2007-10-31 15:34:46 By russ r
• Janice
  
  Russ R again. If you wish a more direct discussion on your eye problems, and related anxieties,just your feel free to contact me at Rrusrjr2@aol.com I've had nearly two years of experience with my conditions and the related research thruout the U.S. and overseas. Bascom Palmer, Johns Hopkins, Mayo, Northwestern U., UofChicago, Rush, to name a few. Russ R.

• Possible help for CRD?
• Posted: 2008-10-06 00:07:52 By S B
• Hi,
  I'm posting regarding something I seem to have stumbled upon - natural algae named 'Dunaliella salina' and 'Dunaliella bardawil'.
  
  The reason I'm posting, is that my 5yo son was recently diagnosed with rod/cone dystrophy, causing poor night vision, loss of central vision, and very poor colour differentiation, with the problems noticeably worsening over the past few months.
  
  I immediately went into a bit of a frenzy, looking for some sort of cure, and during my search for any kind of treatment (gene therapy appears to be the best hope), I discovered research on Dunaliella bardawil, and then on Dunaliella salina, which showed these forms of algae have very high naturally occurring levels of beta-carotene, including a wide range of cis- and trans- retinal/retinol compounds, as well as the carotenoids lutein and zeaxanthin, and Omega-3 fatty acids - all of which are of benefit to the eye.
  
  After discussion with the retinal specialist who diagnosed my son, I obtained some 'Algotene', produced by ICL Health in Australia (http://www.interclinical.com.au/products.php), and started him on a course of one capsule (500mg) morning and evening (the recommended dose).
  
  NOTE: Algotene was chosen as it was available directly within NZ (where I am). No other reason.
  
  After only a week, I have observed quite a large improvement. He now looks AT me (where he had lost a lot of his central vision, and had been turning his head to one side to be able to see via peripheral vision), and he was playing with his Thomas train set, and just building it - picking up and putting down pieces with no apparent problems - where over the past few months, he had been building it by touch, because he couldn't see it! I have also noticed that his colour differentiation hasn't really improved much yet - mainly night vision and central vision so far, and neither are perfect - but ARE better!
  
  When asked if his eyes are working better, he is emphatic with a "Yes!". 'How?' "In all ways!"
  
  He's also enthusiastic about taking the capsules - even though they taste horrible - which from a 5yo is a pretty good indicator that HE thinks they're helping!
  
  I don't claim that he's cured - but it looks like the slowdown of his deterioration that I had hoped for has not only happened, but his condition is also definitely improving.
  
  It seems that if this stuff is going to have an effect, it shows within the first two weeks, as the Carotene levels in the body rise. We're not at two weeks yet though, and there's some effects...
  
  NOTE: If you try this - make sure it DOES NOT have Vitamin E in it (as some brands available have) - this may cause more problems than cures! (Something I spotted in one of the papers).
  
  I'll attach some of the main links that I have found (and based some of my conclusions on):
  
  http://www.pnas.org/content/97/15/8623.full
  http://www.patentstorm.us/patents/6589989/description.html
  http://170.107.206.70/drug_info/nmdrugprofiles/nutsupdrugs/bet_0032.shtml
  http://journals.cambridge.org/download.php?file=%2FBJN%2FBJN59_03%2FS0007114588000558a.pdf&code=dcfa8911eb96269f3e3ad43a422129d3
  http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1220019
  http://www3.interscience.wiley.com/cgi-bin/fulltext/119181348/HTMLSTART
  
  And these are some brochures and web sales links...
  
  http://www.millennium-health.com/images/Dunaliella-Gold-Brochure.pdf
  http://www.interclinical.com.au/products.php
  
  This link also has more links to reference work...
  http://www.hankintatukku.com/V-betamax.html
  
  http://www.herbalremedies.com/40132.html
  http://www.thehealthierlife.co.uk/natural-health-articles/cancer/dunaliella-salina-algae-anti-cancer-properties-00119.html
  
  
  http://www.health-store.co.uk/acatalog/Oceanic_Beta-Carotene_by_Solgar_-_7mg__180_softgels.html
  https://www.yourhealthfoodstore.co.uk/details.php/p506_natures_aid_natural_beta_carotene.html
  https://www.yourhealthfoodstore.co.uk/details.php/p3584_natures_plus_natural_beta_carotene.html
  
  As I haven't tried any of the above (with the exception of the 'Algotene'), I cannot recommend any of them. Just stuck the links in for your aid...
  
  Errm - again, the main reason I chose Algotene - was that it was the only Dunaliella product that I could find available from within NZ (home). At least it is pure Dunaliella salina!
  
  Good luck with this!

• broken link...
• Posted: 2008-10-08 08:20:08 By S B
• The 'journals.cambridge.' link is broken, please use the following: A. Ben-Amotz, S. Mokady and M. Avron (1988). The ß-carotene-rich alga Dunaliella bardawil as a source of retinol in a rat diet. British Journal of Nutrition, 59 , pp 443-449
  doi:10.1079/BJN19880053: http://journals.cambridge.org/action/displayAbstract?aid=861048
  This is the link to the relevant journal, where a link to the full pdf of the article can be found:
  http://journals.cambridge.org/action/displayIssue?jid=BJN&volumeId=59&issueId=03&iid=860940#
  

• LCA / RPE65
• Posted: 2009-03-03 16:42:36 By S B
• I now have all updates to the above (including a 'diary') at the RNIB website forum here: http://www.rnib.org.uk/messageboard/thread.php?threadID=6243&topicSort=desc
  
  Copy and paste the link into your browser. It appears that the algae is particularly effective with LCA sufferers - in particular RPE65 gene defects. Follow the link to the latest posts.

• Algotene
• Posted: 2009-10-30 08:12:37 By Kjell P
• I've just started taking this, will see if it can help out...bit unsure how much to take however. Recommended is 2-3 caps but I take that is for general maintenance.

• keep your chin up!
• Posted: 2010-04-17 15:45:36 By Patricia G
• I am in the same boat. I am a Radiation Therapist and I had to retire last year, at the ripe old age of 35. I have Diabetic Retinopathy. I miss my patients. As much as I do not like change....life is taking me down a different road . I work for Division of Blind services and I help people just in a different way. You have to keep your chin up and STAY POSITIVE!!! Your life may change.....but you can still help people and be a productive memberof society.......and you can still be happy!