Discovering My Blindness: The SHOCKING truth about my rare genetic condition!

Matthew and Paul sit down to discuss how Paul became blind, the events which led to a diagnosis, and Paul’s belief that his blindness is not a curse—but a gift.

👁️‍🗨️ Discover the unexpected gift in life's challenges as we delve into an intimate conversation with my husband, who shares his journey from sight to blindness due to a rare genetic condition, retinitis pigmentosa. Uncover the truths of living with a disability, the power of perseverance, and the surprising plot twist in his genetic story. Join us in empowering those with visual impairments and learn why obstacles, like blindness, might just be the most profound gifts of all. Don't forget to like, share, and comment with your own experiences, and let's drive a positive change together! #BlindnessAwareness #RetinitisPigmentosa #Empowerment

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[insulanerin]

My best teacher ever had RP. He only taught the oldest students at school because he wouldn't have been able to keep a bunch of 13-year-olds in check, but the 16 to 18 year olds had a ton of respect for him and helped him out when necessary. It didn't matter to us if he showed up in class with his pullover turned the wrong way, he was just great and we were glad he was there.

[williamwalcott]

Paul's laugh is infectious I love it.

[nohbdyathme]

I love how positive Paul is and the support of Matthew.

[bettyhoward]

My mother had RP. She was the original RP patient that they studied. She was the most amazing person I have ever knew. I’d love to tell you her story sometime. It was an amazing journey. Thank you for bringing this to light. Love you guys.❤️

[ashp]

I have RP as well. My vision deteriorated when I was around seven. It has been quite slow and my vision is hard to explain but I would say very blurry. At the age of 35, I have retained around 60% of my vision. I hope I don’t lose any more vision but you never know with this disease. Thank you for talking about your eye disease, Paul.🌈❤️

[navneetkaur]

He needs to be on TV, everyone should know him. He is so expressive, detailed, precise and yet positive, sensitive and kind. Explaining the disease, symptoms, it's discovery, what he went through, in such a clear way without showing fear or negativity. Phenomenal. What a great guy. Haven't seen or even read about such a person yet. I m I awe with him. Truly am. And Matthew is a such a good match. They compliment each other so well. God bless you.. and both of you are doing such a great job with this channel. We are grateful.. love you guys❤❤❤❤❤❤

[PokhrajRoy.]

I just discovered your channel and you two seem adorable. Also, as a queer person, it’s nice to see a happy and thriving couple.

[ashinthebox]

I have congenital glaucoma and am legally blind. My vision has gotten worse and worse as ive gotten older. Ive been feeling like my life wont ever be the same or full. But listening to you is such an inspiration i now know i can live a full and happy life. Thank you for sharing your story.

[SarrahSafi]

My daughter has a rare disabling condition usually passed down by genetics but her father and I were checked and we found she’s the first as well. The Universe has a beautiful plan for people like you two ♥️

[BenSwagnerd]

As a science nerd, the "de novo" factor was super interesting to learn about.

I have a dear friend who is 100% blind due to retinal detachment as a result of type 1 diabetes. He went 100% blind at about 25, and after hearing so much about his story it is so interesting to learn more about different types of blindness.

Thank you for sharing!

Editing to add: i am in the process of trying to figure out my own health, it is something autoimmune, potentially lupus, ehlers danlos, mcas, pots, or a combo of some of the above. I so relate to the idea of feeling relief when you have the name of something and therefore able to move forward and make steps to adapt. Cant wait for that feeling!

[kimberlyallen]

I can tell you that many of my patients who are given these types of diagnosis are usually relieved to have an answer even if the prognosis isn't great. Having an answer brings understanding and then a way forward to figure out the next steps. You guys are great to watch.

[nursebridgie]

My wife’s Mom has RP and lost her vision over a period of 20 years. She’s a fierce woman and it’s been a wonderful journey learning with and from her.

[Darcee.Says.Stuff.]

The remark at 07:03 is super familiar to me. Being diagnosed with an incurable genetic disorder that affects my entire body and means a lifetime of joint dislocations and chronic pain was a relief to me, because I finally had an answer and a medical doctor validated that I wasn't the overdramatic, accident-prone crazy person everyone thought I was. Once I had an answer, I could grieve my "old life" and dreams and rebuild my life with new dreams - and today life is painful, but amazing.

[missdonutaltaccount]

I love how he makes light out of a bad situation, like he's got RP & is blind, but he still makes jokes about it, he's so positive!

[lordpopo]

It's so nice to see a great example of someone being blind who can move on with life. I have keratoconus myself, and i will be completely blind one day, and seeing you guys make the most of your situation helps me be a lot less scared of the future.

[joelmangahis]

He's so pleasantly positive about his situation. He even laughs a lot! He inspires me, especially during those times that I feel down. Such a great guy!

[SophieJ]

Just discovered your channel and love your positive attitude. I’m currently doing my PhD in a lab researching a different rare disease. Here’s to the future and hopefully more awareness and funding towards rare diseases ❤

[janeb]

Wait that genetic story is actually so cool!! That is a seriously great story to tell ❤ I’m watching the rest now ✨

[angelamarie]

Thank you so much for being so open to discussing vision loss and blindness. I've been catching up with your posts today, and I find your life so relatable.

I realized something was wrong with my eyes when I couldn't see well in low light and became totally night blind. I was diagnosed with glaucoma at age 34. But before that, I had a detached retina and a torn retina when I was 18 (a total shock) and then developed cataracts that were removed when I was 29. I ultimately developed glaucoma that's called "trauma induced" from multiple surgeries. I had absolutely no idea I would ever go through all of this either when i was young. I have no central vision in my left eye now from the detached retina and my right eye is pretty stable so far. But I am on multiple eyedrops daily and have been through six glaucoma surgeries now and two cornea surgeries. Despite all this, I can still legally drive, but only locally and never at night because my right eye can be corrected to 20/20. I'm so thankful and blessed to still have that much vision because I know that it's only going to continue to get worse.

Thank you for addressing the misconception that one must have no vision at all to be blind. I am not yet considered blind, but I am visually impaired. When I have to tell people this, they say the weirdest things sometimes. They say I don't look like I have bad eyes. 😂 I was once told that I should be happy because at least I don't have a life threatening disease like cancer. 🤦‍♀️ My MIL told my husband he shouldn't marry me and have kids with me because they'll have bad eyes. 😢

So we've been married for 22 years now and have four kids 🙂

I try my best to be positive, mainly so my family doesn't worry, but inside I'm often sad or afraid. I wish I could laugh more at myself for hitting my head on cabinet doors and stuff like that. You both have really encouraged me to talk to my husband and children more about how I feel. I've realized I keep so much to myself.

[DinamitaLife]

You guys seem like such a healthy couple, I can feel the love through the screen and it makes me so happy! Love you ❤