I lived across the street from two girls (sisters) who both had FA. They spent the majority of their lives in wheelchairs. One passed away in her mid 20s. The other passed away last week at 33. I wasn’t close to the family but on a human level I always felt awful for them. RIP to both of them, they were good people and didn’t deserve this. I’m glad their suffering is over. Wish I was closer to them in life, I regret that.
A work friend has this. She used to walk (not well, but she did walk), then it was the wheelchair. now she just works from home, but we keep in touch over the office teams system. Breaks my heart, cos she's a lovely girl with an absolutely filthy sense of humor. I'll just carry on being her friend and making her laugh.
My best friends son has this. I had never heard of it. When he was a little boy of around 6 she noticed he was clumsy and he did not walk very well. She brought him to the doctor and they told her he was lazy. This went on for years and he got worse as the years went by and all they told her was he was lazy. When Katrina hit her house flooded and he was trying to cut sheetrock out of the house. She had breast cancer and could not do much. He was about 16 at the time. His balance was off and his speech was slurred. He could not cut the sheet rock and had to get a chair and use it as a walker. She kept sayong there was something wrong and she felt it was neurological. She died about two years later never knowing what was wrong with him. He kept getting worse and had some sort of a problem and was hospitalized. They found out he was a diabetic and was treating him for that. He was still having problems. I do not know exacting what was going on but he stayed in the hospital. He started having some sort of heart problems and a doctor there reconized the symptoms and finally diagonised him with Fredricks Axtaia. He finally went home and went in a wheelchair. His speech was very slurred and his hands were shaky. He would go to a gym with friends but he stayed the same and kept getting worse. His dad was a piece of you know what and did not take very good care of him. He was lazy and the house was dirty so the sons hands would be dirty from using his hands to spin the wheels of the chair. And the dad would buy junk food and ise a lot of salt and stuff and not change his pee jug. It was pretty bad. The son threw the pee jar on his dads bed and then one day the dad just up and packed his clothes and walked out. He did not pay the house note or the utilities and just left the son to fend for himself. So the son would sell things out the house and rely on friends for help. Them he was put out the house because it was forclosed and the son dissapered. Now I have heard he is in some sort of facility. His sister does not know where and the dad is living with someone sharing a house. It breaks my heart and I tried to help by bringing him to the doctor and such but I was taking care of my parents at different houses and my husband was working out of state. But I feel guitly now. I feel like the doctors just brished off him at such a young age when he probably could of got some sorr of help and put on disability. It is a horrible disease and I believe he had a bad case.
I have a daughter with FA. She was diagnosed at age 9. She is now 30. She is having a lot of issues because of her heart. She has heart failure. But she was diagnosed with heart problem and then cardiologist was smart and thought to have her checked for FA, because she did not have any other symptoms to speak of at the time. Even with all her trouble she keeps a good attitude. She is married, even, but no babies for her, as much as she would love to have one. She knows she could never take care of a baby. When she was diagnosed, I was devastated. It helped when someone told me…it’s not the end, but a definitely different lifestyle. Hang in there.
Ali_ya my daughter was diagnosed at 8 and my son at 6. You will get through it. Take one day at a time. Don't worry about the future, live in the presant. I was scared to for a long time. Because they are dependant on you, you will be strong for them and when they see you are strong they will get their strength from you. So you will become each other's strength.
My girlfriend didn’t tell me she had this until today.. now I can’t stop crying. She tells me not to but I can’t.. it’s getting worst her doctor says she only has 1-2 years left to live..
Starchy carbs & grains in excess cause damage to the brain, heart, pancreas, inflammation etc. Natural fats aren't the problem of pizza it's the bread! Ataxia people should be on a KETO diet bcz grains & starchy vegetables turn into sugar in the blood....very toxic to the brain, heart, etc if too much consumed. None are needed for health, but even healthy people should be eating only small amounts if they like those foods. Sugar is sugar, whether it comes from corn or wheat or fruit, sugar in excess damages the body, and the current recommendations are still toxic levels, look around.... carb overdose everywhere. Avoiding what is commonly known as sugar isn't enough. Grain & corn & potatoes turn into high amounts of sugar when digested. Toxic. Especially to people with genetic pre-disposition to diabetes or Ataxia. KETO diet could slow the progression, and they should do clinical studies on reversing it with the extreme low carb diet & nutritional supplements.
CORRECT - A strict grain free diet. There are roughly 225 grain derivatives to watch out for. Study the list and eliminate ASAP and enjoy life! STRICT this means check your food and drinks, your supplements, your body washes/ shampoos, your prescriptions, lotion, etc
@@hosannayeshua Stop putting useless advice on this video. A genetic illness will NOT improve by diet change or anything else. Sadly, until a treatment or cure is found, FA is progressive and terminal.
A strict grain free diet. There are roughly 225 grain derivatives to watch out for. Study the list and eliminate ASAP and enjoy life! STRICT this means check your food and drinks, your supplements, your body washes/ shampoos, your prescriptions, lotion, etc
Mark 8:33 But when he had turned about and looked on his disciples, he rebuked Peter, saying, Get thee behind me, Satan: for thou savourest not the things that be of God, but the things that be of men.
Anyone else watch Your lie in April?
Me :>
lol me thats why i saw the video
yes but how does this relate to it? unless its been that long that i forgot what the story was
@@CherryTwistXD it’s most likely the illness she has :(
@@CherryTwistXD because that’s probably the illness kaori had.
I lived across the street from two girls (sisters) who both had FA. They spent the majority of their lives in wheelchairs. One passed away in her mid 20s. The other passed away last week at 33. I wasn’t close to the family but on a human level I always felt awful for them. RIP to both of them, they were good people and didn’t deserve this. I’m glad their suffering is over. Wish I was closer to them in life, I regret that.
A work friend has this. She used to walk (not well, but she did walk), then it was the wheelchair. now she just works from home, but we keep in touch over the office teams system.
Breaks my heart, cos she's a lovely girl with an absolutely filthy sense of humor.
I'll just carry on being her friend and making her laugh.
Miss you kaori
I’m glad she found out.
You are a Brave young lady. God bless you. Much more power to you.
My best friends son has this. I had never heard of it.
When he was a little boy of around 6 she noticed he was clumsy and he did not walk very well. She brought him to the doctor and they told her he was lazy. This went on for years and he got worse as the years went by and all they told her was he was lazy. When Katrina hit her house flooded and he was trying to cut sheetrock out of the house. She had breast cancer and could not do much. He was about 16 at the time. His balance was off and his speech was slurred. He could not cut the sheet rock and had to get a chair and use it as a walker. She kept sayong there was something wrong and she felt it was neurological. She died about two years later never knowing what was wrong with him.
He kept getting worse and had some sort of a problem and was hospitalized. They found out he was a diabetic and was treating him for that. He was still having problems. I do not know exacting what was going on but he stayed in the hospital. He started having some sort of heart problems and a doctor there reconized the symptoms and finally diagonised him with Fredricks Axtaia. He finally went home and went in a wheelchair. His speech was very slurred and his hands were shaky. He would go to a gym with friends but he stayed the same and kept getting worse. His dad was a piece of you know what and did not take very good care of him. He was lazy and the house was dirty so the sons hands would be dirty from using his hands to spin the wheels of the chair. And the dad would buy junk food and ise a lot of salt and stuff and not change his pee jug.
It was pretty bad. The son threw the pee jar on his dads bed and then one day the dad just up and packed his clothes and walked out. He did not pay the house note or the utilities and just left the son to fend for himself. So the son would sell things out the house and rely on friends for help. Them he was put out the house because it was forclosed and the son dissapered. Now I have heard he is in some sort of facility. His sister does not know where and the dad is living with someone sharing a house. It breaks my heart and I tried to help by bringing him to the doctor and such but I was taking care of my parents at different houses and my husband was working out of state. But I feel guitly now.
I feel like the doctors just brished off him at such a young age when he probably could of got some sorr of help and put on disability. It is a horrible disease and I believe he had a bad case.
Thank you! Stay strong. Praying for a cure.
i have this, it took years for the final diagnosis as well
My cousin got this today pray for him yall he’s only15☹️😔😟
It's not a death sentence
My children were diagnosed with this disease in two girls 6 and 8 years old, I don't know what to do where to turn for help, I'm very scared
😰
neurologists, start there see what they say go on from there
My 2 older sisters and oldest brother have it also.
I have a daughter with FA. She was diagnosed at age 9. She is now 30. She is having a lot of issues because of her heart. She has heart failure. But she was diagnosed with heart problem and then cardiologist was smart and thought to have her checked for FA, because she did not have any other symptoms to speak of at the time. Even with all her trouble she keeps a good attitude. She is married, even, but no babies for her, as much as she would love to have one. She knows she could never take care of a baby. When she was diagnosed, I was devastated. It helped when someone told me…it’s not the end, but a definitely different lifestyle. Hang in there.
Ali_ya my daughter was diagnosed at 8 and my son at 6. You will get through it. Take one day at a time. Don't worry about the future, live in the presant. I was scared to for a long time. Because they are dependant on you, you will be strong for them and when they see you are strong they will get their strength from you. So you will become each other's strength.
My girlfriend didn’t tell me she had this until today.. now I can’t stop crying. She tells me not to but I can’t.. it’s getting worst her doctor says she only has 1-2 years left to live..
Im a doctor.... I really like her Smile... God bless y
susan pearlman wrote a book on Ataxia.
Clumsiness is me.
No kidding tho. I do have friedreichs.
Aaa
Aa
Hi I'm your biggest fan
I do too
Is there any treatment ?
No, just surgery and medication but sometimes it doesn't help.
I have FA and my sister does
Starchy carbs & grains in excess cause damage to the brain, heart, pancreas, inflammation etc. Natural fats aren't the problem of pizza it's the bread! Ataxia people should be on a KETO diet bcz grains & starchy vegetables turn into sugar in the blood....very toxic to the brain, heart, etc if too much consumed. None are needed for health, but even healthy people should be eating only small amounts if they like those foods. Sugar is sugar, whether it comes from corn or wheat or fruit, sugar in excess damages the body, and the current recommendations are still toxic levels, look around.... carb overdose everywhere. Avoiding what is commonly known as sugar isn't enough. Grain & corn & potatoes turn into high amounts of sugar when digested. Toxic. Especially to people with genetic pre-disposition to diabetes or Ataxia. KETO diet could slow the progression, and they should do clinical studies on reversing it with the extreme low carb diet & nutritional supplements.
It's genetic
You are right! And carnivore.
CORRECT - A strict grain free diet. There are roughly 225 grain derivatives to watch out for. Study the list and eliminate ASAP and enjoy life! STRICT this means check your food and drinks, your supplements, your body washes/ shampoos, your prescriptions, lotion, etc
@@hosannayeshua Stop putting useless advice on this video. A genetic illness will NOT improve by diet change or anything else. Sadly, until a treatment or cure is found, FA is progressive and terminal.
A strict grain free diet. There are roughly 225 grain derivatives to watch out for. Study the list and eliminate ASAP and enjoy life! STRICT this means check your food and drinks, your supplements, your body washes/ shampoos, your prescriptions, lotion, etc
Friedreich's Ataxia is a GENETIC ILLNESS. It's a genetic mutation. You cannot treat it or cure it with diet or by changing your soap etc.
Really beautiful
Can you get stem cell treatment?
No
Am also cause FA ataxia since 2015😭😭😭😭
Hewo
0p
Mark 8:33
But when he had turned about and looked on his disciples, he rebuked Peter, saying, Get thee behind me, Satan: for thou savourest not the things that be of God, but the things that be of men.
@@KristianWant My Comment is not a Time Stamp, it's a Bible Verse.
i know why you go straight go to the comments
love Jesus Christ and God PLEASE