I to have this life changing disease. Blind in my right eye and can only see very little out of my left eye. ( It's like looking through a straw) Stem cell therapy is the only answer for me and so many others.But, that's a ways off. We must never lose our faith. 🙏
Hi William: Don't give up hope! Please contact the Choroideremia Research Foundation to receive updates on clinical trials and support! @curechm curechm.org info@curechm.org #choroideremia
You know, when some ENFJ or ESFJ or whatever says "Don't give up", I don't even hear it. But when a fellow INTJ says that, I want to pause and listen. I've been through so much crap in the past 10+ years that I just feel stuck now and have planned to take my life several times. I don't know why I am still here but it was really helpful to hear you say the things you said. Thank you.
@Mara you are welcome! I would like to offer a suggestion. Find something that you loved to do as a child and do it. For an example: I loved to craft stories and explore ideas. Here on RUclips I can craft just such things. Let your brain plan out your dream then act on it even when the end doesn’t seem realistic
Hi Joseph, i have this decease too. I have lost my right eye and almost lost my left eye. Sometimes i feel well because i am trying not to thing about it BUT sometimes something inside me push me to give up. The good thing is that those moments o am finding some videos such yours and give me help-faith. THANK you very very much! Please continue what you are doing!!!
Got the same condition, I'm 69, male, guess I'm really starting to struggle with it, BUT thankful I've had decent eye sight for so long. That gene therapy doesn't seem to have gone so well does it? I was at a conference near Frankfurt, Germany last year, that was the main message. Fingers crossed something else will come along.... PS I'm ISTJ. Thanks for your video.
@Chris Sharma I understand your sentiments. However I encourage you to not let go of your life as there are treatments that are currently in the certification process that are effective for treating Choroideremia. Please talk with your doctor and look into the Foundation Fighting Blindness for more information. I will say a prayer for you
Hi Chris: Don't give up hope! Please contact the Choroideremia Research Foundation to receive updates on clinical trials and support! @curechm curechm.org info@curechm.org #choroideremia
Please take Lutein, I have choroideremia and lutein is a eye supplement my eye doctor in Philadelphia told me to take once a day 20mg to help reduce the progress of the disease
I also have the same disease. Did you receive gene therapy? I'm 26 now. Been diagnosed since 12 years old. Peripherals are getting worse day by day. Thanks for the video man.
@Tristan Du Preez yes, I received a gene therapy of sorts through a clinical trial in just one eye so far. Unfortunately I had an adverse reaction in the recovery process. You’re welcome for the video! And don’t give up fighting! I will say a prayer for you
Hi Tristan: Don't give up hope! Please contact the Choroideremia Research Foundation to receive updates on clinical trials and support! @curechm curechm.org info@curechm.org #choroideremia
As you, I have no set up : I record my video on my IPad mini which has 10 years old ^^ (no one ever complain about it, quality is still good). And I found an editing tool which work perfectly on my computer. Months ago, I woke up practically everyday with idea, I needed to put my ideas on the external world to share them. _INTJ we absorb useful knowledge, we make connections between information, we update informations. We can share our useful knowledge to the world to help people, and explain them on the simplest way possible, instead to keep it for ourselves. Knowledge, informations, ideas are made to be shared. I feel very bad and guilty if I don't share my ideas. _I saw a new word, I was curious to learn what it is _ And because now I believe in synchronicity and not in coincidences _ Now, in the future if I meet someone (maybe I met him yet), who tell me this word or that his peripheral vision decrease, I will share him this video, that I put on a playlist. Thank a lot for sharing, you learn me something important I didn't know. I enjoy your videos. Many people already told me : "Give up" so many times. Last year I answered to a coworker ESTJ : "I will not give up" I am sure about something, and even if It takes months or years, I will never give up.
I to have this life changing disease. Blind in my right eye and can only see very little out of my left eye. ( It's like looking through a straw) Stem cell therapy is the only answer for me and so many others.But, that's a ways off. We must never lose our faith. 🙏
@William Bishop agreed! Never give up!
Hi William: Don't give up hope! Please contact the Choroideremia Research Foundation to receive updates on clinical trials and support! @curechm curechm.org info@curechm.org #choroideremia
You know, when some ENFJ or ESFJ or whatever says "Don't give up", I don't even hear it. But when a fellow INTJ says that, I want to pause and listen. I've been through so much crap in the past 10+ years that I just feel stuck now and have planned to take my life several times. I don't know why I am still here but it was really helpful to hear you say the things you said. Thank you.
@Mara you are welcome! I would like to offer a suggestion. Find something that you loved to do as a child and do it. For an example: I loved to craft stories and explore ideas. Here on RUclips I can craft just such things. Let your brain plan out your dream then act on it even when the end doesn’t seem realistic
Hi Joseph,
I am relatively new to your channel, but wanted to say I am really loving your content! You are awesome, keep it up! :)
@Erin Masleck welcome to the channel! I am glad that you love my content and I hope that you continue to enjoy it! You are awesome too 😎
Hi Joseph,
i have this decease too. I have lost my right eye and almost lost my left eye. Sometimes i feel well because i am trying not to thing about it BUT sometimes something inside me push me to give up. The good thing is that those moments o am finding some videos such yours and give me help-faith. THANK you very very much! Please continue what you are doing!!!
@Zaf Ko thank you for sharing your experience. I hope that you continue pushing forward with your life! And thank you for your support 🙂
Got the same condition, I'm 69, male, guess I'm really starting to struggle with it, BUT thankful I've had decent eye sight for so long. That gene therapy doesn't seem to have gone so well does it? I was at a conference near Frankfurt, Germany last year, that was the main message. Fingers crossed something else will come along.... PS I'm ISTJ. Thanks for your video.
Very inspiring! I needed to hear this! (love the orange aesthetic) Thank you!
@Simon Arnback you are welcome! And thank you!
It’s a motivational video guys, don’t be concerned at the *title* (much, I mean yeah there is a genetic problem),
I have this too..I'm really scared..I'd honestly be happier dead then blind.
@Chris Sharma I understand your sentiments. However I encourage you to not let go of your life as there are treatments that are currently in the certification process that are effective for treating Choroideremia. Please talk with your doctor and look into the Foundation Fighting Blindness for more information. I will say a prayer for you
Hi Chris: Don't give up hope! Please contact the Choroideremia Research Foundation to receive updates on clinical trials and support! @curechm curechm.org info@curechm.org #choroideremia
Please take Lutein, I have choroideremia and lutein is a eye supplement my eye doctor in Philadelphia told me to take once a day 20mg to help reduce the progress of the disease
@Aidan Campbell2005 I actually do take a vitamin with lutein. My doctor told me to take a vitamin that is a AREDS 2 formula. Thank you for the tip! 🙂
I also have the same disease. Did you receive gene therapy?
I'm 26 now. Been diagnosed since 12 years old. Peripherals are getting worse day by day. Thanks for the video man.
@Tristan Du Preez yes, I received a gene therapy of sorts through a clinical trial in just one eye so far. Unfortunately I had an adverse reaction in the recovery process. You’re welcome for the video! And don’t give up fighting! I will say a prayer for you
Hi Tristan: Don't give up hope! Please contact the Choroideremia Research Foundation to receive updates on clinical trials and support! @curechm curechm.org info@curechm.org #choroideremia
As you, I have no set up : I record my video on my IPad mini which has 10 years old ^^ (no one ever complain about it, quality is still good).
And I found an editing tool which work perfectly on my computer.
Months ago, I woke up practically everyday with idea, I needed to put my ideas on the external world to share them.
_INTJ we absorb useful knowledge, we make connections between information, we update informations. We can share our useful knowledge to the world to help people, and explain them on the simplest way possible, instead to keep it for ourselves. Knowledge, informations, ideas are made to be shared.
I feel very bad and guilty if I don't share my ideas.
_I saw a new word, I was curious to learn what it is _ And because now I believe in synchronicity and not in coincidences _ Now, in the future if I meet someone (maybe I met him yet), who tell me this word or that his peripheral vision decrease, I will share him this video, that I put on a playlist.
Thank a lot for sharing, you learn me something important I didn't know. I enjoy your videos.
Many people already told me : "Give up" so many times. Last year I answered to a coworker ESTJ : "I will not give up"
I am sure about something, and even if It takes months or years, I will never give up.