How do people live when they have Friedreich's ataxia?
I'm doing a school project on a genetically inherited disease called Friedreich's ataxia and i need more information. But i really need is a scientific journal on it from someone... anyone... so please help me.
My name is Michel Beaudet, I'm 47, have FA and live in Quebec, Canada.
I'm sending this message to invite people to join a list for those with ataxia. The list is called Internaf and
there's also a website full of info at http://internaf.org
International Network of Ataxia Friends is a mailing list for ataxia patients and family which serves as a support group and information exchange vehicle. There are currently over 680 subscribers from more than 40 countries worldwide.
Subscriptions to INTERNAF is free.
For info on how to subscribe, go see, http://internaf.org/network/services.html or
for email only access click here and send: [email protected]
for full yahoogroups features access go to http://groups.yahoo.com/group/internaf/join
ps: Don't hesitate to email me if you have questions about internaf
Internaf - INTERnational Network of Ataxia Friends
http://www.internaf.org (+ info
Can people with Friedreich Ataxia get pregnant?
Is it possible for a 20 year old female, who is suffering from the effects of Friedreich Axtaxia quite severely, able to become pregnant?
Yes, I saw some program on Discovery Health like 5-6 years ago and the mother had the disease and she had 3 or 4 children. There is a possibility of your children being born with it too though.
It is an Autosomal recessive disease, meaning both parents must be carriers. There's a 50% chance of the kids being carriers, 25% chance of actually having it and 25% chance of them being unaffected, but chances that they will have it will be higher if the mother has it. (+ info
Iron Chelators that are legal to obtain in other countries have shown success in treating Friedreich's Ataxia
does anybody outside the US have access to ferriprox or Deferriprone or know if it is available for prescriptions. i live in Atlanta, GA and I would like to travel some where to obtain the medicine instead of waiting the year or two it may take to pass FDA guidelines here in the USA. Georgia allows one to travel outside US and obtain medicine via prescription and bring it back but i have no idea how to go about doing this. Any clues? or has anybody else ever done this?
You should probably start by contacting Dr Des Richardson at: Iron Metabolism and Chelation Program, Children's Cancer Institute Australia for Medical Research, Randwick, Sydney, New South Wales, Australia.
He has published the most on this topic and could probably guide you.
If your physician in Atlanta is cooperative, you could probably arrange to have the medication shipped directly to him under a compassionate use program. Also, you should check with the NIH to see if any US sites are investigating such products.
One correction: The drugs are not "legal to obtain" per se -- they are investigational prescription meds. This is the same status they would have in the USA.
Good luck. (+ info
How could you get 13 y old who is diagnosed with Friedreich’s Ataxia feel good about his self, and hope in?
It kind of hard but treat him the same bc he is still your son hang in there I have a cousin that is paralyzed be was in an injury and he didn't know he was paralyzed till a couple of days bf he left the hospital so I know he went through a lot of stages till he actually accepted be there for him just treat him normal love him (+ info
are Spinal Ataxia, Spinocerebellar Ataxia and Friedreich Ataxia all the same name for the same disease?
so i have to play someone with Friedreich's Ataxia disease in Drama. I have read up about it, but i would really appreciate some ideas or tips on how i could develop my character or how i should move/speak.
any advise is welcome :)
thanks so much! xxx
This video features young people with Friedreich ataxia:
An alteration of FXN gene alters pre-mRNA processing leading to decreased protein levels - thus these people have perfectly normal brain but not enough energy to normally walk and talk. Curved spine, heart problems... very sad (+ info
Friedreich's Ataxia: what is the course of this disease like?
what are the financial, emotional and social effects of friedreich's ataxia?
financial: life long illness requiring supportive care so ongoing costs
emotional: requires ongoing support
social: depending significantly on the severity of the illness
try to read it on www.mayoclinic.com or familydoctor.org, good luck (+ info
Boy of 10 years having FRIEDREICH ATAXIA - pl suggest any latest treatment.
his gene analysis indicates having abnormally expanded alles .[ FA -confirmed]
having peripheral sensory neuropathy[ no mayopathy]
cardiac involment present.
please suggest latest treatment or best institute world wide.
try childrens hospital of philadelphia - they specialize in latest treatments, studies, therapies, etc. they also offer help to the family in learning how to live with the disease. (+ info
Does anybody else have Friedreich's Ataxia? and if so, have you found anything or anyone that can help?
I don't have the condition, but below are some links to organizations and information that may help-
The National Ataxia Foundation-
The NIH Friedreich's Ataxia Fact Sheet
The A-T Children's Project
http://www.atcp.org/ (+ info
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