7 Facts About Retinitis Pigmentosa You Should Know

7 Facts About Retinitis Pigmentosa You Need!
Hey everyone, welcome back to the channel! In today’s video, I’m going to give you 7 facts about RP, or retinitis pigmentosa. Whether you’re newly diagnosed, a long-time RP-er like me, living with someone who has RP, or just curious, this video is for you.

RP is Genetic: It's a disorder causing a breakdown of cells in the retina. I have X-linked RP, but there are many variants. At its core, RP is genetic, and there's not much we can do about that currently.

Symptoms Vary: Symptoms can include peripheral vision loss, tunnel vision, night blindness, and light sensitivity. Everyone experiences RP differently, so connecting with others can be very helpful.

No Cure Yet: There's no cure for RP today, but lots of research is ongoing. Managing your condition and preserving your eyesight are key until a cure is found.

Track Progression: Tracking your RP progression is important, even if it's tough. It helps in understanding and managing your symptoms better.

Low Vision Aids: Use tools and apps to help with daily tasks. Whether it's magnifying glasses or smartphone apps, these aids are essential in preserving your eyesight.

Genetic Counseling: This helps understand the genetic aspects of RP, especially if you're considering having kids. It’s something I plan to explore more.

Research and Clinical Trials: Stay updated with the latest research. Participating in trials can contribute to finding a cure. While I'm cautious, many of my friends have found it beneficial.

Understanding these points will help you manage RP better and make informed decisions about your health. If you found this video helpful, please share it with others who might benefit. Thanks for watching!

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[SandieSears]

Your tips are very helpful and informative especially in the world of computers which do put added strain on the eyes.
When someone receives their diagnosis from either their parents if a child, or Specialist they may also go into denial for many years as they may only suffer from one or two symptons to start with and believe the inevitable will not happen. RP is progressive so whether you are a parent or someone who has just been told they are a sufferer of RP dont be afraid to reach out and obtain as much information as possible as there are people that can help with support and guidance. Remember someone has been in the same place as you are now. We all pray that one day a cure will be found xx

[sarahlim]

I do say, RP is a new topic for me, because I have never heard about this. And because of this video, I feel that there is so much to be aware of. Your video is really and truly inspiring!! Great video. 👏

[shelleyhughes]

Another great video! Always so proud of you for creating this and sharing your journey. This is very helpful to understand and share 💚

[MickSears]

These are excellent tips Rob especially for young or early diagnosed sufferers. I hope this is reaching folk. Keep up the good work!!

[GIDDOFPL]

Me and my wife have just started our journey with genetic counselling.
We have been seen 2x now at Northampton General have have had our options explained for family planning etc and have given consent to start the process for IVF / fertility.

[rjetravel]

Great video mate, really interesting, helps people without RP as well, understanding what our friends/family dealing with!