Lost my ability to drive 5 years ago, I'm 28 now. RP is a rollercoaster that is completely unpredictable. God is with us, he's holding our hand through this.
Diagnosed with RP on 2018 at 18, still i drive at night but with utmost difficulties, still few years left for my night drive, finger crossed. By the way, you are doing an amazing work out here, sharing the experience. Trust me, i can understand every drop of your tears, a hug to you, be strong.
Hi - diagnosed with RP in 2017 at 32 and totally sympathise with what you’re going through and appreciate you being a voice for the community. Watched a few of your videos and the ‘tapping’ stairs thing you mentioned really hit home. I had my licence taken off me before my actual diagnosis - never had a ticket or came close to an accident although I was never a confident driver - and my first reaction was anger that my independence had been taken away. As my condition has progressed I’m thankful every day they took my licence away from me before someone got hurt which gives me some peace. Thank you again for sharing your story - we need to be more vocal if not more visible as a community and encourage more funding in research to find a cure.
Every video I watch on your channel I cried like a baby knowing that my daughter has RP this is so hard for me but iw will continue to watch your videos because through those tears you gives me hope even though she doesn't fully understand I know she will soon stay bless
Sending you so much love and support from the UK. I was diagnosed with RP in 2019 and had to turn in my license the same year. I was and still am mourning that loss as it was so much of who I was. Driving was my independence, my freedom and a joy for me that to date, I have not been able to replace. I cried with you as I totally know how you feel. RP is tough and scary. It's a rollercoaster none of us signed up for but we are here together. You are not alone 💗
Hey I hope you are well…I’m so sorry you had to give up driving…I also have RP (I’m 24 diagnosed at 3) us with RP need to support one another. I’d love to have a chat with you about our experiences, if you are interested please let me know 🙂
Thank you so much for sharing a piece of your story. This has been such a beautiful journey I’ve embarked on. RP changed my life for the better even if it’s hard to see sometimes. 🙏🏼🤍
Thank you for doing this. You are in fact taking charge of circumstances that RP presents to us. You will not look back. It will allow you to look forward. I entered BEP program in Florida and have been vending for 13 years. The day I gave up my license was a huge relief. Having Regret and this eye disease together is disastrous. You have options. Go to the local Division of Blind Services in Dallas. Education , all the latest gadgets and tools, and employment await you.
I have RP and I love cars so much. (U could check my playlists haha) Actually Im a petrolhead when I was a kid, but I don't get a driving licence yet, just because I was diagnosed with RP 4 years ago. 😫 Now my vision lose is pretty severe now. I just CANT allow myself to get the licence cuz it may cause some potential danger. 😭 I genuinely love driving and cars. Desperately, I wish one day I could own a dream sportscar and enjoy driving it in real life rather than the virtual. I never give up this hope. 🌈 Cars are a BIG part of my life which give me great power & strength to be confronted with RP.
Hugs hugs hugs. I spent two days crying (again) recently because my young daughter is losing her sight rapidly right now. I felt so bad about it. I don’t want to live with so much sadness or fear anymore. It’s not a good choice when we are alive right? I need to make peace at all of the junctions on this bumpy road. I need to live more in the present. I feel for you and I am sending you strength and love.
Endogenous therapeutics is starting a clinical trial in Dallas for retinitis pigmentosa. Check it out and never lose hope your journey has just begun. Good luck and God bless.
We're here for you. Hang in there. RP is not easy... at all. But you're young and free spirited and you will find your way to the new now. I dont know what you believe but being a Christian I want to share a verse with you...Psalms 119:105 105 Your word is a lamp for my feet, a light on my path.
I'm in limbo. I have RP genes, including a dominant one, but my symptoms aren't classic. I have family history, but my parent from the RP side doesn't appear to have the disease, despite likely being the source of my dominant gene. So no one can tell me what's going on or what to expect. 😬
Our bodies are all very different. It’s important to remember that. I wouldn’t compare your body to anyone else’s. Don’t look too far into the future. Focus on the present!
@@Jordanxrise Thanks! I have enough other health complications and young kids at home and it's just a lot right now. Getting the genetic testing back and being told my results were inconclusive and that they aren't typically that way was a huge blow. Story of my health life. Atypical and hard to figure out.
My elder daughter is 9 years old now. Her eyesight is superb now but the doctor has diagnosed that she has got RP. We got devastated. We don’t know how to move forward and what is going on and what’s going to happen. Is there anyway we could prevent the pigmentation getting spread. She doesn’t know yet
Thank you for sharing your story. I wish I knew the answers. I’m on my own journey of trying to find answers right now. I will surely keep everyone posted on my findings.
Lost my ability to drive 5 years ago, I'm 28 now. RP is a rollercoaster that is completely unpredictable. God is with us, he's holding our hand through this.
🙏🏼🙏🏼🤍 thank you for sharing.
Diagnosed with RP on 2018 at 18, still i drive at night but with utmost difficulties, still few years left for my night drive, finger crossed. By the way, you are doing an amazing work out here, sharing the experience. Trust me, i can understand every drop of your tears, a hug to you, be strong.
Thank you so much. 🙏🏼🙏🏼
Hi - diagnosed with RP in 2017 at 32 and totally sympathise with what you’re going through and appreciate you being a voice for the community. Watched a few of your videos and the ‘tapping’ stairs thing you mentioned really hit home.
I had my licence taken off me before my actual diagnosis - never had a ticket or came close to an accident although I was never a confident driver - and my first reaction was anger that my independence had been taken away.
As my condition has progressed I’m thankful every day they took my licence away from me before someone got hurt which gives me some peace.
Thank you again for sharing your story - we need to be more vocal if not more visible as a community and encourage more funding in research to find a cure.
Thank you so much for sharing your story. We will all get through this. 🙏🏼
Every video I watch on your channel I cried like a baby knowing that my daughter has RP this is so hard for me but iw will continue to watch your videos because through those tears you gives me hope even though she doesn't fully understand I know she will soon stay bless
This makes me so happy! Thank you for watching and supporting my journey. I’m happy my journey may shed some light for your daughters journey.
Sending you so much love and support from the UK. I was diagnosed with RP in 2019 and had to turn in my license the same year. I was and still am mourning that loss as it was so much of who I was. Driving was my independence, my freedom and a joy for me that to date, I have not been able to replace. I cried with you as I totally know how you feel. RP is tough and scary. It's a rollercoaster none of us signed up for but we are here together. You are not alone 💗
Hey I hope you are well…I’m so sorry you had to give up driving…I also have RP (I’m 24 diagnosed at 3) us with RP need to support one another. I’d love to have a chat with you about our experiences, if you are interested please let me know 🙂
Thank you so much for sharing a piece of your story. This has been such a beautiful journey I’ve embarked on. RP changed my life for the better even if it’s hard to see sometimes. 🙏🏼🤍
Thank you so much for reaching out. Thank you for watching my journey! 🙏🏼🤍
I have RP as well, you are not alone. God is with us.
🙏🏼🤍🙏🏼🤍
Thank you for doing this.
You are in fact taking charge of circumstances that RP presents to us.
You will not look back.
It will allow you to look forward. I entered BEP program in Florida and have been vending for 13 years. The day I gave up my license was a huge relief. Having Regret and this eye disease together is disastrous. You have options. Go to the local Division of Blind Services in Dallas.
Education , all the latest gadgets and tools, and employment await you.
🙏🏼🙏🏼🙏🏼
I have RP and I love cars so much. (U could check my playlists haha)
Actually Im a petrolhead when I was a kid, but I don't get a driving licence yet, just because I was diagnosed with RP 4 years ago. 😫 Now my vision lose is pretty severe now. I just CANT allow myself to get the licence cuz it may cause some potential danger. 😭
I genuinely love driving and cars. Desperately, I wish one day I could own a dream sportscar and enjoy driving it in real life rather than the virtual. I never give up this hope. 🌈
Cars are a BIG part of my life which give me great power & strength to be confronted with RP.
Thank you for sharing a part of your story. 🤍
Hugs hugs hugs. I spent two days crying (again) recently because my young daughter is losing her sight rapidly right now. I felt so bad about it. I don’t want to live with so much sadness or fear anymore. It’s not a good choice when we are alive right? I need to make peace at all of the junctions on this bumpy road. I need to live more in the present. I feel for you and I am sending you strength and love.
Thank you so much for sharing a part of your story. This is all apart of the human experience. It’s ok to be sad.
@@Jordanxrise ❤️🤗❤️
Be strong with every door that closes a new one opens
Absolutely! 🤍🙏🏼
Endogenous therapeutics is starting a clinical trial in Dallas for retinitis pigmentosa. Check it out and never lose hope your journey has just begun. Good luck and God bless.
Thank you for sharing. 🤍🤍🤍
Blessings Jordan
Blessings to you.
Same to same
God is with us, God will make it better
I believe this to be true.
We're here for you. Hang in there. RP is not easy... at all. But you're young and free spirited and you will find your way to the new now. I dont know what you believe but being a Christian I want to share a verse with you...Psalms 119:105
105 Your word is a lamp for my feet, a light on my path.
It’s all a journey. 🤍
I'm in limbo. I have RP genes, including a dominant one, but my symptoms aren't classic. I have family history, but my parent from the RP side doesn't appear to have the disease, despite likely being the source of my dominant gene. So no one can tell me what's going on or what to expect. 😬
Our bodies are all very different. It’s important to remember that. I wouldn’t compare your body to anyone else’s. Don’t look too far into the future. Focus on the present!
@@Jordanxrise Thanks! I have enough other health complications and young kids at home and it's just a lot right now. Getting the genetic testing back and being told my results were inconclusive and that they aren't typically that way was a huge blow. Story of my health life. Atypical and hard to figure out.
I have Rp as well. Im scared to drive....
Follow your intuition. 🤍
My elder daughter is 9 years old now. Her eyesight is superb now but the doctor has diagnosed that she has got RP. We got devastated. We don’t know how to move forward and what is going on and what’s going to happen. Is there anyway we could prevent the pigmentation getting spread. She doesn’t know yet
Thank you for sharing your story. I wish I knew the answers. I’m on my own journey of trying to find answers right now. I will surely keep everyone posted on my findings.
Psssh, I wouldn't recommend driving in Dallas for people with 20/20. Hugs 💝
Lmao agreed.
Well the good news is pretty soon you’ll be able to buy a car that will be mostly autonomous we’re not that far off
Yes! If only that could help me in other areas of life where we need vision. Lol
I know how your feel, Hugs.
Thank you 🤍
❤️❤️❤️
🤍🤍
💪🏽
🙏🏼🙏🏼
You got this girl.👍💜
Thank you 🤍🤍🤍