Friedreich's Ataxia - Forked Up!!!
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Uploader Comments (meekus3)
Video Responses
All Comments (38)
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Thanks for sharing your experiences with everyone. My sister has this... never gets better, only worse. Recently, she visited her chiropractor who didn't know what he was doing and induced a stroke after he manipulated her neck! You yourself are a very strong person, I can assure you. It was very smart of you to use this as a video response to that btw ;)
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really.
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@Pabloso100 hope you get better soon? really!?!
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I also have FA , and now i will try Idebenone in high dosage to see if there is any change in the behaviour of FA. And by the way, treatments for FA are available in US labs , but they don't make it public. Human frataxin is available for sale in US labs. As you know, in FA there is not enough frataxin produced by the mythocondria of our cells. May God touch the hearts of those who have the cure and keep it hidden from the people who need it...
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Thank you so much for sharing this. It is very important for people to learn about things like FA and other neurological disorders so they can understand how awesome these people who are affected by these disorders really are. Thank you again for sharing this.
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i'm diagnosed with FA, and i'm 15. me and my twin sis were diagnosed when we were 12. I noticed she kinda talked, slow and had trouble. i'm not yet like that but i guess i'm getting to it :/ and i only use a wheelchair for school. cause its big and i get tired of walking everywhere! And i usually just hold someones arm to walk around so i dont fall or anything. soo yeah....it's tough. .__.
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@meekus3 it was a speech therapist conference. The presenter was talking about different neuro conditions that affect people's speech & used y'all's vid as illustration for Friedreich's. Everybody enjoyed it and it was a great starter for discussion. And the very end when Jen said her ass hurts--we were all feeling her then, cuz we'd been sitting in that workshop for like 4 hrs. :-D
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Many thanks for your presentation. You are a very brave girl.
Hope you get better soon.
Pabloso100 7 months ago
@Pabloso100 Unfortunately, it's a genetic disorder. There is no getting better, like how you would get better from a cold or flu.
meekus3 7 months ago
lol. Jen, I saw your vid at a therapists conference last week. you rock. :-)
hellcatblue 1 year ago
@hellcatblue really? What kind of conference? How was it used? We're curious because after posting this to Youtube people can just do whatever they want with it, so we never hear about other people filching it.
meekus3 1 year ago