Blindness Awareness Month Fact of the Day (October 15)

An individual with a genetic condition, such as Retinitis Pigmentosa, can have no family members whatsoever that have the disease. Such is the case with my family. I have Retinitis Pigmentosa but there is no trace of it on either side of the family. Now obviously both of my families have to be carriers, but my RP is a sporadic, isolate form meaning they do not know what gene mutation caused my RP or how exactly I got it. This is a good and a bad thing. It is a good thing because my sister doesn’t have it and she really wants to go into the medical field and for what she has to do, it would be very hard for her to do with a visual impairment such as RP. It is a bad thing because I do not know if I have kids if I would pass it onto them or not. Even if you do know where your RP came from, there is still the chance of you not knowing if you were going to pass it onto your kids or not.. and that’s a whole controversial topic in itself. Again, there’s an idea for another post. 🙂

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Jessica N and Makiko

Jessica is a proud Texan. She graduated in 2014 with her Master of Science in Rehabilitation Counseling and is now employed. She is visually impaired and has a retinal disease, Retinitis Pigmentosa. Originally Jessica started blogging about everything from being diagnosed with the disease to where she is now, almost 9 years later. Then, Jessica went to Guide Dogs for the Blind and was blessed with Makiko, her new guide dog. Now, her blog "The Way Eye See The World" is about everything related to visual impairments, including guide dogs.

5 thoughts on “Blindness Awareness Month Fact of the Day (October 15)”

  1. A friend’s mother has RP however neither my friend, his brother, sister or any of my friend’s brother or sister’s children have RP (my friend doesn’t have RP). With access technology and advances in medicine visually impaired people can live a very good life. I am, myself blind however my blindness was caused by a blood clot and has no genetic cause. I certainly don’t regret having been born. Life is precious and while the issue of whether or not to have children is a profoundly personal one, there are far worse things in this world than being visually impaired. I and other blind people I know could wipe the floor intellectually with some of the non-disabled people who patronise us. I’d rather be blind than a patronising fool which is what many of the people who patronise people with disabilities are. Sorry for the strong comment but it is heartfelt.

    1. Hello!!! Thank you so much for your comment. I appreciate hearing from you. I wholeheartedly agree with you and if my post came across any other way, I apologize. Knowledge is power and I can see the benefit in knowing if your child will have a visual impairment. With that being said, I don’t know that my decision would be any different. I will go into this in another post sometime. 🙂

  2. I feel like knowing whether your child will have RP early could be a good thing, like knowing if your child will have any other genetically transmitted trait, for early preparedness. though i also think that your child doesn’t necessarily have to have it in order to teach them things they would have to know if they did have it, especially since they will have exposure to those sorts of things already anyway… actually, i’m not sure the first part of that statement made sense, but i’m going to leave it in case…

    in any case, my fiance is colorblind. sometimes i wonder if our kids will be colorblind. i know it’s not *really* the same thing, but it’s somewhat similar…

    also, someone said recently, it’s nice to know what you’re genetically likely to get (the word i want to use here escapes me right now…), but it’s good to remember you won’t necessarily get it. [in this case, it was heart attacks/cardiac problems, which has been two generations of females having them but she hasn’t had them yet [and hopefully never will], but i feel like it could still be somewhat relevent.] but it won’t hurt to be prepared!

    1. Hey babe. I appreciate you taking the time to think about my post and develop such a response. I agree with you, knowing early whether your child has RP or not can be a big thing.. Knowledge really is power, as I’ve said before, especially in situations like this. It is still taking some getting used to hearing him referred to as your “fiance”.. I’m also not sure I knew he was colorblind but that does sort of ring a bell. It is similar babe, and there are certain accommodations, while possibly not as significant as with someone with RP, that you will have to help your child learn to self-advocate for and so I totally see the connection. Has he ever discussed with you any obstacles or particular challenges he has had either in school or growing up in his personal life? I’d be interested to know more. I hope that your friend or colleague will never have the heart issues; however, she does make a very good point. If the gal didn’t know that she was genetically prone to said disease, she might not keep such a careful eye on that and that could be life-threatening. Again, knowledge is power. Thanks for taking the time to write such a thought out response. I appreciate it. 🙂

      1. As a biology major who was required to take genetics, I have thought about genes and heredity a lot, sometimes possibly a bit too much. As such, your post reminded me of various things I had thought about when I was taking the class. As far as I know, though, my fiance does not have too many challenges (though I guess his case isn’t as bad as others.) Even with driving, the lights are in standard positions (red top or left side.) While typing this, I have thought about the fact that maybe he doesn’t have too much trouble because there have been some accomodations made for this. Even if he has trouble distinguishing colors, there are other features he can use to know what’s going on, like stop signs, or the colors are different enough he can still read it, such as dark colored text on light colored paper or something… I can’t really think of anything else he has trouble with. Oh, just graphs that are bad at choosing colors that are distinctive enough. He’s asked me to confirm which lines correspond with which colors on the key. But I think it’s just that he’s gotten used to it, as well.

        That paragraph was much longer than I intended, but it’s ok. In any case, about my friend who mentioned the heart issues, she recently turned 75. She has also said, “Everything is good in moderation. Even moderation.” That is pretty much her motto, and I really like it. Even though she hoped that she would never have any issues, she still got the information to know how to stay healthy and, in case they came up, what to do about it.

        All in all, I agree, knowledge is power. It’s easier to know ahead of time what to expect so you can prepare for what will happen. If what you expect doesn’t happen, then good. No harm done. But if you don’t know what is going to happen, you can’t make accomodations, and it could be harder or less pleasant to deal with later. Like not knowing it will rain, so you don’t have an umbrella. Then you get soaked while trying to protect your laptop.

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