Friedreich Ataxia

Discussion of what Friedreich Ataxia is,how it impacts the lives of those who have it, what can be done to improve quality of life and how important more research is to find a cure.

Category:

Education

Tags:

• Bruce
• Lefroy
• Centre
• medicine

[sherebaby]

my whole family has been affected by fa its a terriable condition please pray for us.

[oscargurses]

....i bet you sound beautiful to me. my sister has FA. the disease is ugly, YOUR NOT. i dont know, but i love you. stay strong, the end of this shitty disease is coming soon!

[ct89ccx]

@azilanaolim

Youtube does not let me put links in here.

Please go to beikebiotech (.) com and on the first page, there is a recent article about new studies on stem cells and Ataxia ! Please read it carefully . I am willing to go and try it.

[ct89ccx]

Please go to beikebiotech (.) com and on the first page, there is a recent article about new studies on stem cells and Ataxia ! Please read it carefully . I am willing to go and try it.

[azilanaolim]

@ritenow3 keep fighting... thanks for the reply... does he takes any med? happy new year:)

[ritenow3]

@azilanaolim Thanks for asking about my son. He is having trouble with muscles and coordination and feeling really tired. He is no longer able to walk and is having difficulty with lots of things but remains head strong and determined to be as independant as possible. I admire him so much for his strength. There are times when it really gets to him but he tries to bounce back as fast as possible. It is a terrible disease that needs to be eliminated.

[pianosongz83]

@ritenow3 Yes it was FA for sure no doubt. I took her to every doctor apt. ect ect she was one of the oldest to survive. If you would like to look her up private messege me and I will give her name. She had dna testing ect. She went to a doctor at the age of 19 followed him all around the country for special drugs they gave her that were NOT fda approved. She followed him for years. She resided in Augusta maine and YES died at 67 with genetic testing for FA.

[ritenow3]

@andrearobinthornhill

don't think this was FA, she would not have survived to 67 but it could have been close. Did she do genetic testing for FA? This disease is life shortening. The sad thing about it is that even plants need frataxin to survive. If they can get frataxin from a plant then why can't they go ahead and make a synthetic frataxin, delivered somewhat like insulin is to a diabetic? What is taking so long?

[azilanaolim]

@ritenow3 hi! how is your son? if you find any cure please contact me... i need it too....

[azilanaolim]

@sherebaby oG, thats really bad...how are you all now?i hope it will not happen to my daughter. I want to have kid again, but.... im scared. having FA is not a joke.

[NjeeC]

my friend has FA and I would really like to help him! it's so sad to just look at him and do nothing...

[VReyland91]

Ugh. Another religion debate. >.<