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.

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5 thoughts on “Rare Disease Day

  1. Yes, a little compassion and grace go a long way. You and Torrey are kind and wise people. Little things make a big difference. I remember when I was younger I would look past people with a visible disability, so as not to embarrass them by staring or wondering. Now I realize that was probably worse than staring. Now I look them in the eye and smile and if they are struggling, ask them if they need help. Great post, Jenelle!

  2. I loved this post. I wish I would have remembered it was Rare Disease Day. Like you, I also have RP. I think my experiences with RP have increased awareness among my friends, family, and significant others family. We have to start somewhere right? That story you told about the woman with the guide dog being asked to leave the restaurant really got to me. I’m really having that issue right now of being sighted enough that people don’t believe me. I try not to get mad and just keep in mind they are not aware, but it’s hard sometimes. Love your blog and will definitely read more of your posts. I have a blog about my RP! Would love for you to do the same. 🙂

    • Thank you Jessica! It’s so nice hearing from people that can relate to the RP struggles. I almost tripped over a huge dog while walking into a coffee shop this morning! I was so lucky that no one saw (I think) and that the dog didn’t bite me – I somehow saw it just as I was about to literally step on it. Phew! But EEKS!

      Can you remind me of your blog? I think my sister follows your blog, but I’d like to check it out as well.

      Thanks!
      Jenelle

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