3 of my brothers are diagnosed with this disease but they are all very strong, i hope a cure turns up soon so they can live their life freely and happily
My best friend has FA. she is a beautiful caring girl and, knowing that she doesn't have much longer to live really gets her down. my mission in life is to try and keep her going. i love her. dearly. i also have a disability. ehlers-danlos syndrome, but then we have someone who understands each other. If someone is having a bad emotional day, because of what they have to deal with, or if there having a bad physical day. we are there for each other. all day every day.
My best friend in the whole world has been diagnosed with this for years. She has recently had a new development, and is in terrible abdominal pain all of the time. She lives is Leesburg, FL, and is getting virtually no help from the physicians she is seeing. None of which seem to have any real know how to deal with her disease. Can anyone offer any advice? I live in MI, and I am doing all I can for her from here, but I need HELP. Anything, I will take anything!
I think one of my biggest problems with this disease is how inconsistent it is. I'm glad not everyone needs a wheelchair within 5 years of diagnosis.. but sometimes I hate that they don't have another name for people who have a more advanced case.
Good video anyhow, I shed a tear. I do hope I am cured before I die.
Are there nutritional support protocols that would someway help? I have a friend with MS using ambertose (sp?) and it's supposted to repair nerve damage.
Why do they get this?? Makes me so sad and wish I could do something.
I take Idebenone, it cant repair nerve damage but it slows down heart disease. But it's still being researched and not yet accepted by the FDA, so unless your rich you won't get enough to stop heart disease.
My girlfriend was just diagnosed with FA a month ago. She is the strongest most beautiful girl I have ever met. I love her to death and that's never gonna change.
@sp0rk6 same. she is a beautiful caring girl and, knowing that she wont have much longer to live really gets her down. my mission in life is to try and keep her going. i love her. dearly.
on zach had FA anyone got his yahoo name or email I would like to chat about stuff see how's he doin..maybe become good friend's with him...I have Fa also.
I am a sufferer of FA and I find this video particularly inspirational. Having been diagnosed this year It leaves me with the hope that I will still be walking when they find a cure. The Sun is Shining :-D
Thank you for taking the time to watch this video. Thank you for caring and for your Dua.
4 years ago, when he was 19, my son was diagnosed with this disease. FARA1989 needs all the support it can get to keep the research going and to make it able to find a cure ! And inshAllah they will find it soon becouse everyday counts!
My God. I have never heard of this before...and I like to think of myself as a fairly well-educated and informed person re: rarer medical disorders...my husband and my mom both have rare rheumatological disorders (Still's Disease and Giant Cell Arteritis, respectively).
Thank you for this, and my heart goes out to the sufferers and their families.
I am sorry to hear 2 of your familymembers are not well. I wish all of you all the positive and the good. As a mother of a 23 year old son suffering from this disease i thank you for taking the time to watch this video. As to not knowing about this disease, the first time i heard about it was 4 years ago when my son was diagnosed with this disease. 4 people pro year are diagnosed with this disease in Holland. It is a very rare disease.
This Friedreicher's Ataxia is a very rare disease. Most people never heard about it. Neither did i, the first time i heard about it was when my son was diagnosed with this. Now 4 years ago, when he was 19. As you can see the research needs to be supported so they can find a cure, as soon as possible. Becouse each day counts!!! That is why i want people to know about this, i hope from my heart this way more people will support the foundation FARA!
Sister, my heart goes out to you & your lovely son, & to all those who suffer from this. I had never heard of this before which is very sad, especially as millions are spent in labs on such things as viagra! I hope with all my heart they find a cure for this, GOD willing.
Thank you sis for watching this video and thank you for caring and your supportive words! This disease is very rare, in Holland 4 people pro year are diagnosed with this disease. Hopefully more people will know about it and support FARA1998 to make it possible for researchers to find a cure real soon, becouse every day counts!!!!
"We think we can get this one!" The optomism is terrific and I hope the cure is found soon! My sympathy for all involved and I will give what I can...
The more people know about this disease the more people hopefully will support Fara1998 so they can keep on giving financial support to the research in order to find a cure real soon. Every day counts!!!
Sister this is indeed a very rare disease, only few people every year are diagnosed by having this. In Holland, where my son and i live, 4 people every year get this diagnose.
InshAllah our brothers and sisters will indeed donate this very very important fund sister! THis way the research can go on and can make the difference between despair and hope!!!!
Thank you Rosalind my dear friend, for taking the time watching this video and for the care you show. Let's hope and pray with whole of our heart they will find a cure soon.
I am so sorry your little brother has this too. And i do understand what you are saying, wanting to take some of his pain. You must love him very much. From my heart i wish you, your little brother, all of your family all the best, strength and lots of love. God bless you.
Peace be with you, Thanks for the information and awareness to this Friedreich's Ataxia ,Until now I don't know about this, May ALLAH bless them and take their pain away, Ameen.
I ask ALL who watch this video to support FARA !!!
My beautiful 23 year old son was diagnosed with Friedreich's Ataxia 4 years ago. The Friedreich's Ataxia is very agressive in my son's case. He is in a wheelchair since 2 years now. I, as a mother, ask you ALL PLEASE PLEASE SUPPORT FARA !!! For my son, and for everybodyelses son or daughter diagnosed with Friedreich's Ataxia! Your support COULD MAKE THE DIFFERENCE between despair and hope!!!!!!!
My twin brothers have FA. This video is is a small insight to what parents ,families and researchers feel, and it is quite touching. I hope more people see it. And do something. RIP Benjamin James. - Robert.
I have Friedreich's Ataxia, stay positive and keep strong! Hopefully a cure will be found soon!
KieranSC91 2 months ago
1 OF THE LADIES MIGHT HAVE GRAVES DS
haluakhan 11 months ago
LOVE ALL OF THEM WHO LOVE THEIR CHILD.......I FULLY UNDERSTOOD THEIR FEELINGS AFTER MY SON WAS BORN.....
haluakhan 11 months ago
3 of my brothers are diagnosed with this disease but they are all very strong, i hope a cure turns up soon so they can live their life freely and happily
1111serina 1 year ago
My best friend has FA. she is a beautiful caring girl and, knowing that she doesn't have much longer to live really gets her down. my mission in life is to try and keep her going. i love her. dearly. i also have a disability. ehlers-danlos syndrome, but then we have someone who understands each other. If someone is having a bad emotional day, because of what they have to deal with, or if there having a bad physical day. we are there for each other. all day every day.
RobynWishes 1 year ago
My best friend in the whole world has been diagnosed with this for years. She has recently had a new development, and is in terrible abdominal pain all of the time. She lives is Leesburg, FL, and is getting virtually no help from the physicians she is seeing. None of which seem to have any real know how to deal with her disease. Can anyone offer any advice? I live in MI, and I am doing all I can for her from here, but I need HELP. Anything, I will take anything!
carmenccutler 2 years ago
God
made me cry
bofliqe 2 years ago
Comment removed
bdesaw 2 years ago
I think one of my biggest problems with this disease is how inconsistent it is. I'm glad not everyone needs a wheelchair within 5 years of diagnosis.. but sometimes I hate that they don't have another name for people who have a more advanced case.
Good video anyhow, I shed a tear. I do hope I am cured before I die.
Mesquissto 2 years ago 11
I don't know if this applies with this disease but Acetyl L-Carnitine is good for proper working mitochondria.
maryssng 2 years ago
Are there nutritional support protocols that would someway help? I have a friend with MS using ambertose (sp?) and it's supposted to repair nerve damage.
Why do they get this?? Makes me so sad and wish I could do something.
maryssng 2 years ago
@maryssng
I take Idebenone, it cant repair nerve damage but it slows down heart disease. But it's still being researched and not yet accepted by the FDA, so unless your rich you won't get enough to stop heart disease.
Mesquissto 2 years ago
My girlfriend was just diagnosed with FA a month ago. She is the strongest most beautiful girl I have ever met. I love her to death and that's never gonna change.
IcebergRocker 2 years ago 2
omg i also have FA
Demoniclegion5 2 years ago
awesome vid!
my best friend in the entire world has FA.
i hope she can live to be a ripe old age [:
sp0rk6 3 years ago 7
@sp0rk6 same. she is a beautiful caring girl and, knowing that she wont have much longer to live really gets her down. my mission in life is to try and keep her going. i love her. dearly.
RobynWishes 1 year ago
on zach had FA anyone got his yahoo name or email I would like to chat about stuff see how's he doin..maybe become good friend's with him...I have Fa also.
Lygar30 3 years ago
I am a sufferer of FA and I find this video particularly inspirational. Having been diagnosed this year It leaves me with the hope that I will still be walking when they find a cure. The Sun is Shining :-D
Boonanzar 3 years ago 3
This story has touched me in a way you can't imagine, May Allah heal the sick and those who's in need,, God bless you all ..
Afraofsheffield 3 years ago
Afraofsheffield
Thank you for taking the time to watch this video. Thank you for caring and for your Dua.
4 years ago, when he was 19, my son was diagnosed with this disease. FARA1989 needs all the support it can get to keep the research going and to make it able to find a cure ! And inshAllah they will find it soon becouse everyday counts!
followingmypath 3 years ago
My God. I have never heard of this before...and I like to think of myself as a fairly well-educated and informed person re: rarer medical disorders...my husband and my mom both have rare rheumatological disorders (Still's Disease and Giant Cell Arteritis, respectively).
Thank you for this, and my heart goes out to the sufferers and their families.
LillyBunnyBoo 3 years ago
LillyBunnyBoo
I am sorry to hear 2 of your familymembers are not well. I wish all of you all the positive and the good. As a mother of a 23 year old son suffering from this disease i thank you for taking the time to watch this video. As to not knowing about this disease, the first time i heard about it was 4 years ago when my son was diagnosed with this disease. 4 people pro year are diagnosed with this disease in Holland. It is a very rare disease.
followingmypath 3 years ago
i appreciate seeing this message. thank you for sharing
bigeeezy 3 years ago
bigeezy
As a mother of a 23 year old son suffering from this disease i thank you from my heart for taking the time to watch this video. Thank you!
followingmypath 3 years ago
My sympathy goes out to all those suffering from this .. thank you minstral for sharing this!
someonewhocansee 3 years ago
someonewhocansee
Thank you Hans!
This Friedreicher's Ataxia is a very rare disease. Most people never heard about it. Neither did i, the first time i heard about it was when my son was diagnosed with this. Now 4 years ago, when he was 19. As you can see the research needs to be supported so they can find a cure, as soon as possible. Becouse each day counts!!! That is why i want people to know about this, i hope from my heart this way more people will support the foundation FARA!
followingmypath 3 years ago
Sister, my heart goes out to you & your lovely son, & to all those who suffer from this. I had never heard of this before which is very sad, especially as millions are spent in labs on such things as viagra! I hope with all my heart they find a cure for this, GOD willing.
BoriChumba 3 years ago
BoriChumba
Thank you sis for watching this video and thank you for caring and your supportive words! This disease is very rare, in Holland 4 people pro year are diagnosed with this disease. Hopefully more people will know about it and support FARA1998 to make it possible for researchers to find a cure real soon, becouse every day counts!!!!
followingmypath 3 years ago
May Allah heal all the patients
and help them find the cure Ameen
Asiaofegypt 3 years ago
Asiaofegypt
Thank you sister!
InshAllah they will find the cure soon!!!!
followingmypath 3 years ago
I seriously dont need to think before i raise my hand when someone says: Who supports FARA?
May Allah cure patients... and i hail those who coped and are still coping...
May Allah Grant them Heaven and Ajer for being patient....
cheetahface7 3 years ago
cheetahface7
Thank you sis!!! Thank you for your beautiful words and your beautiful support!!!!
followingmypath 3 years ago
"We think we can get this one!" The optomism is terrific and I hope the cure is found soon! My sympathy for all involved and I will give what I can...
oldiesedit 3 years ago
Karen, Thanks my friend!!!
Let's hope and pray they can find a cure real soon! Every day counts!
followingmypath 3 years ago
WOW! I was not aware of this at all! Thanks for sharing this informative video with me Karen! Peace to You Always!~Ted
PatongTed 3 years ago 2
PatongTed
Thank you for watching this video!
The more people know about this disease the more people hopefully will support Fara1998 so they can keep on giving financial support to the research in order to find a cure real soon. Every day counts!!!
followingmypath 3 years ago
followingmypath, Karen sent this video to me as well. I am sorry to hear about your son and I wish you luck with finding a cure.
aoibheil 3 years ago
I Am So Sorry, My Prayers are with you!!
Rustypoole 3 years ago
Rustypoole
Thank you so much!
I thank you from my heart!!!!!
followingmypath 3 years ago
I hope those who can help will do so.
You're all in my prayers
iadiedee 3 years ago
iadiedee
Thank you so much sister.
All we can do is hope and pray.
InshAllah a cure will be found soon.
InshAllah.
followingmypath 3 years ago
4ironeyes,
Sister this is indeed a very rare disease, only few people every year are diagnosed by having this. In Holland, where my son and i live, 4 people every year get this diagnose.
InshAllah they will find a cure soon!!!!
followingmypath 3 years ago
Thank you so much dear sister for asking our brothers and sisters to make Dua. This is a beautiful request wich means so much!!!
followingmypath 3 years ago
InshAllah our brothers and sisters will indeed donate this very very important fund sister! THis way the research can go on and can make the difference between despair and hope!!!!
followingmypath 3 years ago
Thank you Rosalind my dear friend, for taking the time watching this video and for the care you show. Let's hope and pray with whole of our heart they will find a cure soon.
followingmypath 3 years ago
protokid1
I am so sorry your little brother has this too. And i do understand what you are saying, wanting to take some of his pain. You must love him very much. From my heart i wish you, your little brother, all of your family all the best, strength and lots of love. God bless you.
followingmypath 3 years ago
May they all get a cure inshallah!
very sad.
Soldior 3 years ago
Soldier
I share your wish and your hope!
InshAllah they will find a cure soon!!!
InshAllah many people will donate this fund so the research can go on and they are able to find the cure!
followingmypath 3 years ago
Peace be with you, Thanks for the information and awareness to this Friedreich's Ataxia ,Until now I don't know about this, May ALLAH bless them and take their pain away, Ameen.
spiritlite 3 years ago 2
spiritlite
Peace be with you too.
I'd never heard about this disease either until my son was diagnosed with it. InshAllah they will find a cure soon.InshAllah.
followingmypath 3 years ago
may Allah help them to find a cure.
IIIIslamIIII 3 years ago 2
IIIIslamIIII
May Allah(swt) help them to find a cure soon inshAllah! Please make Dua for all those who need this cure!
followingmypath 3 years ago
I ask ALL who watch this video to support FARA !!!
My beautiful 23 year old son was diagnosed with Friedreich's Ataxia 4 years ago. The Friedreich's Ataxia is very agressive in my son's case. He is in a wheelchair since 2 years now. I, as a mother, ask you ALL PLEASE PLEASE SUPPORT FARA !!! For my son, and for everybodyelses son or daughter diagnosed with Friedreich's Ataxia! Your support COULD MAKE THE DIFFERENCE between despair and hope!!!!!!!
followingmypath 3 years ago
My twin brothers have FA. This video is is a small insight to what parents ,families and researchers feel, and it is quite touching. I hope more people see it. And do something. RIP Benjamin James. - Robert.
ApertureDisaster 4 years ago
ApertureDisaster
I share your hopes, and i wish your family everything that is good, strength and lots of love. God bless you all.
followingmypath 3 years ago