I am quite certain that I am not qualified in any way to write an article about the latest RP research.  It is even a stretch for me to post on our blog regarding the random information I’ve gathered from my dear friend, the world wide web.  But I’m just in the mood for this kind of thing, which is likely a sign that I’m stuck in what Joy refers to as “cure mode“.  No need to be too concerned – I get stuck in this mode from time to time and I always manage to find my way back out again.  My eyes are, of course, burning from too much screen time, so here is my attempt to summarize the current research for you in order to save you the time and eye strain.

My number one tip for staying on top of the latest RP news is to sign up for Google Alerts.  Thanks to a tip from an east coast “RP friend” of mine, I’ve streamlined my research by using this method.  Just go to google and click on “news” at the top left of the page, enter “retinitis pigmentosa” in the search field.  Once the results come back scroll to the bottom of the page where it says “Stay up to date on these results” and click on “create an email alert for retinitis pigmentosa”.  Enter your e-mail address and you will start receiving daily alerts directly to your inbox.  The alerts that come through are a mixture of medical research and personal stories.

After reviewing the most recent RP-related articles, I am encouraged to learn that researchers are looking into several different approaches to RP treatment, including gene therapy, stem cell therapy, and vision preserving drugs.  From my perspective, none of it is moving fast enough.  Of course I don’t know or understand enough about any of this research to be a good judge of the timing and progress made (not to mention, all of the funding that is required to conduct this research!).

Most recently, I’ve learned that I could potentially stop RP from progressing and prevent getting pregnant at the same time.  Talk about killing two birds wtih one stone.  “A study in September’s issue of the Journal of Neurochemistry reported that a component normally found in the human contraceptive pill helps reduce vision loss in mice with retinitis pigmentosa. “  It doesn’t appear to have been tested on anyone other than mice so far, but check it out for yourself.  Apparently human trials will begin for this drug in October.  My sister’s OB looked into this specific type of mini pill, however, and apparently the drug manufacturers are no longer making it because it does a lousy job contraception-wise.  Hopefully if it does prove to be effective in the human trials, the drug companies will come up with a new one that is specifically for people with RP, including men.

I also want to point out that the FFB does an excellect job of posting the latest RP-related research articles on their site, so I frequently visit this website to make sure I’m not missing out on any new information.

Another sure way to stay on top of current research without having to peruse the web all day is to talk with people on RP forums and Facebook pages.  Joy and I belong to several amazing FB groups, including “Room With a View” (private FB group specifically for visually-impaired women), “Usher Me In”, “Help Find a Cure for RP”, and “RP Family”.

Stay tuned for our upcoming blog on alternative medical treatments for RP, which will include information about our upcoming trip to world-renowned Acupuncturist, Dr. Yu, in Vancouver, British Columbia.

Until then, stay hopeful and encouraged– even if the latest research doesn’t lead to an instantaneous cure today, there is always tomorrow.  And even if tomorrow doesn’t happen, people with RP are living amazing lives everywhere.

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3 thoughts on “The Latest Research

  1. We stay hopeful and encouraged with you! Sigh. We are so proud of you and the countless others who have RP and live amazing lives!

  2. So inspiring Nelly! Keep the posts and information coming, I am eating it up. And come to Seattle soon, k? And stay with us. XO

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