What We See

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Since RP is a genetic disorder; our parents both unknowingly carried the gene, which left us with a 25% chance of having RP. As chances often have their way, we were diagnosed with RP when we were 5 years old, at which time we had already lost a significant portion of our peripheral vision. Since vision loss occurs at such a slow pace, people with RP often adjust to the vision loss in such a way that they do not notice the changes at first. So, while it’s hard to tell how much vision we’ve lost since we were first diagnosed, our opthamologist visits have confirmed that, while our fields have gotten slightly worse over time, our vision has been fairly stable.

Our visual fields are both at around 4-5 degrees (out of 180), so it’s kind of like looking through a tiny straw, making things such as driving and playing sports nearly impossible. Our night blindness and poor depth perception make it pretty difficult to walk in dim-lit restaurants, outside at night, etc.  We have been able to “hang on” to our central vision in the middle of that “straw”, however, so we are able to read large print when the contrast is high enough.  We also have held onto our side vision, so it’s like looking at a puzzle where the frame of the puzzle is put together, along with a tiny piece at the center of the puzzle, but there are various pieces missing in between.  These “missing pieces” don’t look black or like anything really – they just aren’t there.

 

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16 thoughts on “What We See

  1. Hi Joy and Janelle,
    My name is Laurie. I live in Batavia, IL. My 16 year old daughter, Emily has RP. I found your blog from a friend who I used to go to the same church as we did (Joni Ruh). I have been trying to surround Emily with positive role models who have RP. She is struggling emotionally especially this year because the realization of not driving has finally sunk in. She can’t imagine being dependent on someone her whole life!!!! I would love if she could meet you (probably Joy – because it seems like you live close 🙂 ! I think that God sometimes brings people together – and I truly feel that Joni sending this blog to me was not coincidental – but rather a plan of God’s!!!
    Please contact me either by email lfosen@gmail.com or phone 630-803-9589 – if you would be able and/or willing to meet Emily!!
    Many blessings to you and your families!!

    Laurie

    • Hi Laurie! Thanks so much for your message! I would love to meet Emily and hope you received my e-mail about setting up a day and time! Many blessings to you! Joy 🙂

  2. Hi Joy and Jenelle! I am the mother of two adult daughters – not twins! – with Usher Syndrome. One of my daughters found your blog and suggested I read it. WOW!!! What an amazing journey you’ve had – and your parents as well! I’ve been blogging “in our hoUSe” too (http://in-our-hoUSe.blogspot.com), sharing some thoughts about raising children with hearing impairment and RP, the other part of Usher Syndrome. Feel free to read and follow.

    My other daughter has begun a FB community page called “Usher Me In.” – http://www.facebook.com/UsherMeIn?ref=ts Feel free to take a look at that and even post a link to this blog there. And lastly, there’s a new private community on FB for RP that may be of interest to you: http://www.facebook.com/groups/visuallyimpairedblindwomenwithwomenissues/

    In any event, you both write extremely well and with a sense of humor that’s so necessary to gain and maintain momentum in this journey. I wrote just this morning on my blog about positivity! You definitely have it, so I’m glad to have found you.

    Best wishes and keep on writing!
    Louise

    • Hello Louise and thank you for your encouragement! I just read through your blog and it is quite interesting to learn about all that your family has endured. I like all the pictures you include as well! Your daughters are certainly blessed to have you as a mom. Our parents will be “guest blogging” here in the near future, so stay tuned. We will check out the FB pages you recommended as well. Thank You!

  3. Thanks for sharing your stories! Our son, Nathan, was diagnosed recently with RP and we are just starting to learn all about the disease. Nathan is 10 years old and has had vision problems since birth, so to him this diagnosis is just words…..but to us, it provides an explanation for so much (now we understand why he walked into a mailbox or tripped over the dog). When we explained everything to him that the retina specialist told us, his response was, “Well, Mommy, I guess you’ll have to be my personal chauffeur for life.” He has such a positive, optimistic attitude and view on life in general, so he is a great example for my husband and I when we start to feel sorry for him.
    We felt like horrible parents when we found out how bad his vision was when he was only three years old because up until that point we just thought he was very clumsy and uncoordinated. Nathan has learned to thrive despite his total night blindness and severe lack of peripheral vision and has worn bifocals since that first eye exam for his eye muscle disorder. He is an amazing kid and I know he’ll be fine, but as a parent I just wish that it could be me instead of him. We started a team for the upcoming walk in June in Elk Grove Village (yes, we live in Illinois, too!) and raised $750 right away. We are committed to helping find a cure!
    I was a junior high language arts/history teacher up until two days before Nathan was born, and now have been a stay-at-home mom to him and his two sisters ever since. I was planning on trying to return to work this school year but things didn’t pan out for me. Everything happens for a reason, and so now I can focus my time and energy on researching and raising money.
    Keep on keeping us posted! Thanks!

    • Hi Amy! I really meant to respond to you earlier– thanks for sharing all that you did in your comment! Interesting how many similarities we have (living in IL, middle school LA teacher, etc.) I, too, have participated in the Visionwalk and created a team to raise $ for RP– such a fun way to rally friends and family together for a cure. It’s such an exciting time for research, especially for someone Nathan’s age– it just seems like something is right around the corner. He sounds like such a neat kid– and so incredibly positive. I’m actually making reference to your comment in my next blog entry, if you don’t mind!

      Please let me know if you ever have any questions about what it’s like to grow up with RP, acupuncture treatments for kids, etc.– I’d be happy to talk with you more! Thanks for reading our blog, and take care!

      • I don’t mind at all……reference away! Since my message to you, we have raised over $7500 for FFB and I have become part of the leadership committee for the VisionWalk. We took Nathan down to the Lighthouse in the city and met with Dr. Fishman, who my son looked at like a celebrity! I guess now they are leaning towards Nathan having Leibers (LCA), believing that he really has had this since birth. Genetic test results should be back any day now! I thought about your blog the other day when Nathan came home from school and said he got hit in the face in gym class three times with basketballs. His glasses were broken and he had a substitue teacher that day, so he walked around with no glasses on with his friends sticking close by him. His one friend even had Nathan dictate his answers to him and wrote it out for him as the boxes were to small for Nathan to see and the teacher wasn’t there. Nathan, Mr. Positivity, came home and had his first meltdown over his vision, saying it was the worst day ever. Poor guy! He was so proud of himself, though, that he held it all together until he got home that day! Looking forward to ready more on your blog! Thanks!

        • What a rough day– poor kid– he is tough! I ended up using a part of this last comment as well…. it’s for my entry that I’ll post on Monday. That is really a lot of $ you raised for the FFB– so awesome. Tell Dr. Fishman hello from the Derpack twins next time you see him (not sure if he remembers us but we went to him for so many years!) Maybe I should pay him a visit at the Lighthouse sometime! It’s funny that Nathan looked at him like a celebrity– I think as a kid I associated him with RP and would look at him like he gave me the disease or something! He is brilliant and was always very caring despite his nerdy-professor cover. 🙂 Thanks again for sharing about your son– I think it really does help other parents.

    • Tracey – it’s hard to describe to people with normal sight, isn’t it? I’m glad that this dexcription is helpful to you. I keep trying to find a photo to post that shows how I see, but all of the ones I have come across so far just look like pin-hole vision or tunnel vision and are not an accurate representation of how I see. I will keep searching, though…..Or perhaps I just need to figure out a way to make my own.

      Jenelle

      • I must express my peonasrl appreciation for your kind-heartedness helping folks that need assist on your market. Your actual commitment to passing the solution down and up had turn out to be particularly informative and also have frequently assisted regular people like me to achieve their own desires. Your individual educational details signifies a lot in my experience and a whole lot more to my mates. Thanks a lot; through each one of all of us.

  4. Joy and Jenelle, I saw your moms Facebook post about your blog and have enjoyed reading your entries to “catch up”. I had no idea you were going through this even back when we were in school. You are inspirations to so many. I would love to hear from you both and hope all is well.

    • Thank you so much, Julie! It’s so nice to hear from you, and it means to much to us that you’ve taken the time to read our blog. I hope that you and Jenny are both doing well. Thank you for you kind comment.

      Jenelle

  5. I am so grateful to have found your blog!! My little girl was recently diagnosed with RP at five years old as well. Even the doctors at Denver’s Children’s Hospital have had very little information for us, and your words have been amazingly informative. My heartache healed immensely hearing about how happy and full your lives are, and I am hoping to show my girly the same! Keep on posting!

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