In case you haven’t heard, today is not just Leap Day – it’s also Rare Disease Day.  “Alone We Are Rare, Together We Are Strong” is the tagline for this campaign, and I think it’s a brilliant idea.  Public awareness can help living with diseases like RP a lot easier.  For example, I recently heard about a woman with RP and her guide dog being asked to leave a restaurant because the owner saw her reading the menu.  He didn’t believe that the guide dog was necessary since this woman could see enough to read.  He had obviously never heard of RP or being partially-sighted.  Many of these diseases, including RP, are rarely included in mainstream media, so it’s no wonder that the public remains ignorant of these diseases. “Most of the conditions the Foundation targets are considered “rare” because they affect less than 200,000 Americans and stem from defects in nearly 200 different genes. According to the National Institutes of Health (NIH), there are nearly 7,000 rare diseases affecting approximately 30 million (or 1 in 10) Americans” www.blindness.org

I wish that I could say that having RP has helped me not to be as ignorant as the previously mentioned restaurant owner.  However, a few years ago I had an experience that showed me how insensitive I can be.  When I worked for a consulting firm in Seattle, one of my main responsibilities was planning social events for the consultants.  I remember feeling slighted because one of my colleagues always left the events early and never brought her husband to any of the activities I planned – she always had a different lame-sounding excuse as to why he couldn’t join us.  But after I got to know her better, I learned that her husband has early on-set Parkinson’s disease, and was too embarrassed about it to come to the events, and that she frequently had to leave events early because she needed to get home to help care for him.  I remember feeling so ashamed of myself for assuming that she was just a flake and not giving her the benefit of the doubt.  I know this is something that we’re all guilty of to some degree.

My husband and I were just chatting with some friends over brunch on Sunday about how RP has affected our lives and my husband shared some really good insight.  He said that my RP has caused him to give others the benefit of the doubt more.  If someone bumps into him on the street, he doesn’t automatically think, “What an inconsiderate jerk!” or “Watch it buddy!”.  Instead, he thinks to himself, “Maybe there is a reason that person accidentally bumped into me that I don’t know about”.  You really never know what someone else is going through, so why not have a little extra grace for that stranger, neighbor, co-worker, family member, friend, etc. that does something that you find a little bit odd or even rude.  A little compassion goes a long way.

In addition to public awareness, Rare Disease Day aims to encourage politicians to increase funding to the National Institutes of Health and the medical research it conducts.  Join me in participating in Rare Disease Day by signing this petition now.

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.

So one of the first questions most people ask once they find out about RP is:  What is the cure?  And, of course, if anyone is reading this who has been diagnosed with RP, you probably remember the grim advice from your Opthamologist:  prepare to go blind.   Living in today’s day and age, however, we are not satisfied with the information given to us by our doctors because we have a keen understanding that their knowledge goes only as far as the information they themselves have researched.  And with the ridiculous amount of information available on the web these days, the potential to find some piece of information– some study in a random, far-off place that our doctors may not know about yet– is just enough to make us feel empowered to find our own answers.And so begins the ominous, tiresome search for treatment– some magical herb, vitamin, or implant that will bring an end to all the stress, pain, and fear of the future.

When conducting an online search on treatments, there is quite an array of information about trials, treatments and current research studies– from preliminary studies to human trials.  Yet there are also quite a lot of opinions, warnings, and debates.  I went online the other night simply to research one particular treatment– Dr. Yu’s Acupuncture treatment in Vancouver, BC — and before I even realized it, I had been on the computer for 3 hours– till 1am.  And it was with sore, screen-tired eyes that I trudged up to bed, my shoulders tight from hunching over my computer and my mind filled with far more questions than answers.

This was not a first for me.  I have been sucked in by this nebulous search before– it always starts off with a glimmer of hope and ends with a sense of confusion– is there anything out there worth trying?  Which research funds are worthy of my donation?  Which alternative medicine is worth my time and $?  Which treatments have side effects and which are worth the risk?  These questions can be exhausting.

That tiresome evening of research sucked me right into “cure mode”, which most people would think would put them in a state of hope.  But for some reason cure mode usually does the exact opposite to me– I find myself more depressed, more anxious and more distraught over the disease.

So does this mean I should never do research and simply focus on the Psychotherapy i started recently, which is helping me work on accepting my vision loss, or should I fight it?  Does it have to be one or the other?  And does hoping for something different necessarily mean I can’t accept what is?

I have “met” a number of people online who focus all of their attention, 24/7, on finding a cure.  I go on certain forums and see the same people on them all the time– people who must spend every minute of their free time talking about a cure.  I am not judging people who do this or saying it is wrong.  Maybe they’ll find something I won’t– or they’ll find it first.  Maybe being in constant cure mode is completely healthy for them.  It’s just interesting how people deal with RP so differently; I’ve also met several people who are nearly blind from RP who spend absolutely none of their time searching for a cure.

One of these persons is a mentor of mine and someone I really admire.  He has very little vision left, is a successful attorney, and has never once mentioned RP research in the many conversations I’ve had with him.  He chooses to focus more on making adaptations that allow him to live his life well.  He knows braille, has mobility training, and has adaptations that allow him to use the latest techology– computers, cell phones, etc.  He is very involved in the National Federation of the Blind and also serves on a special board appointed by the President that examines disability law as it pertains to blind people.  For him, he would obviously love it if a cure were to come along, but he doesn’t spend his life waiting for it.

For me, I think there does need to be some sort of combination of the two in order to be okay mentally– to have hope but not to constantly live in an obsessive cure mode.  That fine line into obsessiveness is probably different for everyone.  I think for people like me it might mean limiting our online research time to one hour a week– the same amount of time I’m spending at counseling.  For others it may mean going full force into cure mode for a week or so and then taking a few weeks off (who knows the too-good-to-be-true cure that might surface on the web after a few weeks vaca!)

Note:  My sister’s and my research on Dr. Yu’s RP treatment is actually looking promising for us.  Please stay tuned for more information about our upcoming plans, which will be shared in future posts.