Відео

I respect your perspective! I just was diagnosed three weeks ago. The dog poo in a pile of leaves totally says it all. Stay strong.

Been a while since you posted a video. How are you these days?

where can I find these goggles?

i how r u i saw ure vedio i just want to know if the trea ment work if so how much better cause i have lebers to an how can i get in to the treatment thanks for ure time

You are from

Your point about blinking and dry eye is spot on! I believe from using a magnifier for a decade I completely ruined my tear ducts eye moisture all of that stuff dry eye took me out of life for the last 10 years I've had to spend so much time in bed in the dark sleeping for days until the pain went away nothing I could do nobody would even examine my eyes lol that took me almost 10 years to get and finally diagnosed with dry eye

That is awesome

Orange plastic cups :-) lol

I'm LHON affected in 2004. I see people describe and track them the same way lol I think of it as putting different types of dolls in a dollhouse lol classifying different types of people by their style of clothing the way they hold their hands stand emote speak hairstyle if we can tell they have hair lol and try to stick new people I meet in a specific section and floor of the house to help remember who they are... I was in the gene therapy trial in 2011-2013 at Bascom Palmer but I had to leave the trial because I was also diagnosed with multiple sclerosis. I took 16,000 vitamins over 3 years while I was in the trial and got about 30% of my vision back and I was hoping that plus the shot will give me even more improvement and I get my damn driver's license back lol I think it is amazing that you have had improvement it sounds like from you talking about your eye test being a line better on the eye chart is about the same as I got from taking all the pills Idebenone 1,500 mg/day and I know how absolutely amazingly life-changing in a good way a great way that amount of vision coming back can be but and it is a big BUT it also makes things way more irritating lol I used to not be able to see this now I can see it so much better but that's not enough I still can't see it perfectly I want to break it lol Keep your head up and keep fighting girl!

I was in the same gene therapy trials by Dr Guy at Bascom Palmer I was there in 2012-2013 but essentially got kicked out because I also have multiple sclerosis and once I was diagnosed with that they said you can't have a neurodegenerative disease and be in the trial I would be a outlier or whatever lol I am filled with joy to hear that you actually got some of those injections and you really had some improvement results! That is absolutely freaking amazing everything I dreamed about plan for and acted on came true just you know for you lol in 2011 I came up with a plan to take a ton of vitamins and 1500 mg/day Idebenone and was able to improve my vision about 30%. The plan was do what I was doing and get the shot and then be able to drive haha still not there yet but trust me I'll get there :-)

The way you describe our vision is pretty spot on. I need to get some of those glasses I have a lot of people who need to put them on haha

Thank you for making this video. I am going through the same thing only slower. I am loosing things little by little.

Yes it is fairly tough. I have dealt with this for 17 years I am hairdresser. I’ve learned how not to get too close and use what vision I have and I am successful my new clients don’t even know as if something I’ve chosen not to reveal in my business. At first I had tears in my eyes for six months it was very difficult crashed on my bicycle numerous times now I ride a bicycle get around travel on my own it’s doable. However it is tough. Thanks for this video

Thank you! My friend was just diagnosed.

You should have a look at the company called GenSight, they passed phase 3 trials for LHON, 25 participants showed a significant vision increase, 4 showed an increase. Hoping that with medical advances your LHON isn't life long and is treatable soon

You're the best 💜Love you!

Searching for update on LHON landed on your video. I have been affected with LHON for 23 years. Back in 2011, When I was living in Florida I found out about the Bascom Palmer research on LHON and signed up for it, went a few times to Miami for the 8 hours testing. In 2012 moved back to Ohio and never heard back from Bascom Palmer. I called them years later and said that they culminated the research and was going to start a trial, but thats was all. I understand how you feel, because I have LHON. All I can say is, stay positive.

Thank you so much for sharing your story and I think that it is really beneficial for as many people to know about LHON as possible. I am a follower of Scott and Darcy’s content.

Hang in there MD! We support you. - BBG-

Hello Megan we met your mother and father at the Black Point Inn. My husband and I have known them for many years. She told me about your LHON. We are keeping you in our prayers and have you on our prayer list at The Rock Church right here in Scarborough maine. We are believing God for wisdom for the Doctors and a miracle of complete healing for you. You have a wonderful family and so much love n support. Kathy n Mike.

Megan, you are a bright, beautiful, articulate young woman. We pray that you find the continued strength to cope and adjust to this "new normal" that you ( and your loved ones around you) have been challenged with. God Bless. Mark & Kiki Hinman