Interview with Attorney

The link below is an interview with an attorney who has Usher's. It helps me to read it when I am experiencing my own personal pity party.

http://query.nytimes.com/gst/fullpage.html?res=9E01E7DB153FF931A15751C0A96E958260&sec=&spon=&pagewanted=all

Another inspirational attorney...It is not an oxymoron! :)

http://www.abanet.org/disability/spotlight/jan08.shtml

Could not Resist

Okay, turn your speakers up and enjoy! Try not to get so disoriented that you vomit. :)

http://www.youtube.com/watch?v=Z4osbcmbSkc

FFB Advises Antioxidant Combination

Okay, vitamins are nothing new. But, empirical data showing that, only in combination, they slow retinal disease and an accompanying formula which is currently available? That is news. I heard the Foundation Fighting Blindness recommended the use of "New Focus" at their L.A. conference. They cite studies in England which support its use. I did some surfing and found one in PubMed from Sweden.

Many have maintained the reason supplementation has been difficult to study under the current scientific framework is because supplements generally work in a synergistic manner, not an isolated one. A "one variable at a time" scientific structure makes it hard to prove nutritional supplementation. It is good to see researchers testing them in combination as well as isolation.

I know nothing about the company below. I have no commercial interest in them. But, this is the formula recommended by the FFB. Before you roll your eyes thinking, "another airy fairy thing that is supposed to work and does not", read the data. Also note this formula was made to replicate the proportions of the elements included in the study.

http://www.goodhealthusa.com/pd_pure.cfm

Data from the Swedish study. The FFB mentioned English studies as well, if you are motivated to do more research and find them.

http://www.ncbi.nlm.nih.gov/pubmed/17293057?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Gene Therapy

Some scoop on the LCA trials. One of the commenters on the blog below had a gene therapy procedure for LCA currently in clinical trials. LCA is a genetic retinal degenerative disease. Once there is one successful gene therapy trial, then it will be extended to different types of rd disease for which there are identified genes. Verdict is still out. If you want to get a genetic test and be added to a registry, contact the Carver Lab at the University of Iowa.

http://lcablog.blogspot.com/2007/11/one-more-lca-trial-for-rpe65.html

Most Recent Hyperbarics Study

Below is the most recent hyperbarics study. It is unique in that it documents the long term effects of undergoing hyperbarics and its effects on RP.

http://www.ncbi.nlm.nih.gov/pubmed/17674017?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Cyclosporine and RP

I was emailing a Hungarian RPer today. Anyway, I remembered reading about a research study using cyclosporine for RP being conducted at Semmelweis, which is in Hungary. I relayed the info and then was bit by my terminal case of "curiosity killed the cat".

So, I started googling cyclosporine, retinal degeneration and did a patent search. Looks like Dr. Gholam Peyman, LASIKS patent holder, former professor and all around ophthalmology super star, holds a patent on using cyclosporine delivered via IOC for RP.

IOC is lingo for "needle in the eye". I can see why they use the term "IOC". Can you imagine sitting down with your RS and hearing, "We will be delivering this medication via our cutting edge 'needle in the eye' technique." And for the record, a needle in the eye does hurt.

The Hungarian study uses drops instead of IOC. There is some resistance to the idea that a drop can make it to the retina. Anyway, something interesting for the hobbyist. None of the journals offer that box to check on your subscription form. :) Guess I cannot make fun of my husband for playing video games with a hobby like "reading medical journals when I do not have to...."

http://www.patentstorm.us/patents/7083802-claims.html

My Vision Now

My vision nine months post placental implant shows very little change since before the implant. In fact, the visual acuity in my left eye, per the Snellen test, is a line worse. This is not considered "significant" in clinical land. It could have been a bad day. It could have been a good one.

As for subjective improvements? Things have remained very "dirty tunnel" and in major need of some heavy duty cleaning! It was pretty amazing being out of the tunnel for a short time last summer. And the night vision thing?! I felt like a super hero! Of course, my husband was quick to tell me that having normal night vision is a pretty lame super power.

Does this depress me? Well, if I did not believe this was part of a plan for my life, the answer would be "Ummm......of course!" But, I do believe in a Creator and a plan. So, I find it more frustrating than depressing. Annoying...Extremely annoying! That is human nature, I guess. I could focus on being grateful for the vision I DO have as opposed to focusing on what is lacking...Gosh, the horrid puns just keep coming. Guess I need to pray on it.....the gratitude part, not the puns. Or possibly the puns too....:)