My father had this. He suffered for 7 years gradually degrading and eventually passed away. Really sad that there still isn’t a treatment or cure for this. I’m praying there will be in the future so that other people can get cured.
Wow. I met a nice woman, who loss all three of her children to this illness. The first in 2010, he was 27, the 2nd in 2012, she was 31, and her baby a week ago. She was 33.
must be careful for SCA， even though there is no cure for spinocerebellar ataxia, it is still of great necessary to diagosis and have a genetic counseling
@@weluvtomk.__, sorry for receiving this bad information about your mother and this illness. The would say that the only positive thing about that is that now you all know what she has and also know how to deal with her illness. Please, let me say that if you mother has this illness, it is 100% a fact she inherited it directly from either her mother or her father. That is the only way someone can inherit it. Wishing your mother and all of you the best. Be safe!
This genetic condition runs through my family.my grandfather was the carrier.we have lost seven members of the family and another six cousins here and in NZ also have it .
I just turned 25 in May and honestly ive lost my grip strength. I cant open a bandaid. I have slurred speech & Honestly im so scared to have this disease my great grandmother had it she passed away and my grandmother had it she passed away and my father has it & my fathers sister have it, Ive been holding off on knowing if i have this disease. Let me know what motivated you to find out.
Hello 💜 I am a teacher aide who works with two children with this disease. While it’s difficult to watch them struggle, the fire & spark in their souls are undimmed! They are brave, brilliant & I enjoy every second with them. A disease cannot & will not define you. Don’t be afraid 🌸
My step brother has this, has had it sincr he was a little child he’s 23 now as am i. and watchin him get worse as the days go by is saddening, he can’t do anything himself anymore and he’s lost so much weight even tho he eats no diff than before
Are the speech issues and eye movement symptoms unique to all SCA sufferers? Or can someone have this disease and not display those particular symptoms? I ask because my father can hardly shuffle very slowly when he walks, and he tells me he's not in pain, except his back hurts, but I read this can target your spinal cord too. Parkinson's medication did not help, no one knows what is wrong with my dad, and it's like the doctors don't care.
Hi, GJ. Thank you for contacting us. Unfortunately, we're unable to assist you with your concern. Please contact your healthcare provider for assistance.
You must have not read my message. *Parkinson's medication did not help, no one knows what is wrong with my dad, and it's like the doctors don't care.* All they want is his money, they don't seem to care about a diagnoses. Thanks anyway.
Hi, GJ. We're sad to hear that your current healthcare provider is unable to assist you. If you have additional questions regarding the article associated with the video, please contact the corresponding author, Jennifer G. Goldman, MD, MS, at jennifer_g_goldman@rush.edu. She may be able to offer some assistance.
4 роки тому+5
Look into vitamin B1 deficiency and the work of Dr. Lansdale and Dr. Chandler Mars. They have interviews on UA-cam. Also the work of Dr Constantine in Italy
@@atillahcaptuc2105 , not sure if they are joking. My fiancée has ataxia and has been arrested for being supposedly drunk. But if they are joking, it’s a shame.
For more information, click ja.ma/1C5dEWu to read "Two in One: Report of a Patient With Spinocerebellar Ataxia Types 2 and 10" in JAMA Neurology.
My father had this. He suffered for 7 years gradually degrading and eventually passed away. Really sad that there still isn’t a treatment or cure for this. I’m praying there will be in the future so that other people can get cured.
I’m very sorry to read this:( my heart goes out to you
my mother and Grandmother also had type 2 Ataxia Portuguese Acores thank god im ok 62 years old and doing fine
I am so sorry for your loss. I cant believe how hard it must have been for him. He is in a better place now. Rest In Peace 🕊 ❤️ ♥️ 🙏 🤍
@@steveb978 I am so sorry for your loss 🤍🙏♥️❤️🕊
1litre of tears brought me here
mee tooo and suddenly i want to be a neurologist
i cry a lot
My mom have same problem 😭
Wow. I met a nice woman, who loss all three of her children to this illness. The first in 2010, he was 27, the 2nd in 2012, she was 31, and her baby a week ago. She was 33.
How?
My mother had this disease . She can't walk , now my elder brother suffering with this he is only 27 years old 😭
My Mom had this. 3 of her sisters. Her mother. Her maternal grandfather and her maternal great-grandfather. This is a sad thing to have in the family.
must be careful for SCA， even though there is no cure for spinocerebellar ataxia, it is still of great necessary to diagosis and have a genetic counseling
@@tingyanyao3616, Hi! I'm 100% with all you said. Also, thanks for the advice.
In terrified. We've just found out my mom has it.
same my wife
@@weluvtomk.__, sorry for receiving this bad information about your mother and this illness. The would say that the only positive thing about that is that now you all know what she has and also know how to deal with her illness. Please, let me say that if you mother has this illness, it is 100% a fact she inherited it directly from either her mother or her father. That is the only way someone can inherit it. Wishing your mother and all of you the best. Be safe!
This genetic condition runs through my family.my grandfather was the carrier.we have lost seven members of the family and another six cousins here and in NZ also have it .
1 litre of tears....
I just turned 25 in May and honestly ive lost my grip strength. I cant open a bandaid. I have slurred speech & Honestly im so scared to have this disease my great grandmother had it she passed away and my grandmother had it she passed away and my father has it & my fathers sister have it,
Ive been holding off on knowing if i have this disease. Let me know what motivated you to find out.
Hello 💜 I am a teacher aide who works with two children with this disease. While it’s difficult to watch them struggle, the fire & spark in their souls are undimmed! They are brave, brilliant & I enjoy every second with them. A disease cannot & will not define you. Don’t be afraid 🌸
I was cured by him that's why I'm testifying about it
Sorry to say you have it big time it is also in my families
My step brother has this, has had it sincr he was a little child he’s 23 now as am i. and watchin him get worse as the days go by is saddening, he can’t do anything himself anymore and he’s lost so much weight even tho he eats no diff than before
I am so sorry
cannabis helps a lot i have it to
How it diognose in childhood
Thank you
Are the speech issues and eye movement symptoms unique to all SCA sufferers? Or can someone have this disease and not display those particular symptoms? I ask because my father can hardly shuffle very slowly when he walks, and he tells me he's not in pain, except his back hurts, but I read this can target your spinal cord too. Parkinson's medication did not help, no one knows what is wrong with my dad, and it's like the doctors don't care.
Hi, GJ. Thank you for contacting us. Unfortunately, we're unable to assist you with your concern. Please contact your healthcare provider for assistance.
You must have not read my message. *Parkinson's medication did not help, no one knows what is wrong with my dad, and it's like the doctors don't care.* All they want is his money, they don't seem to care about a diagnoses. Thanks anyway.
Hi, GJ. We're sad to hear that your current healthcare provider is unable to assist you. If you have additional questions regarding the article associated with the video, please contact the corresponding author, Jennifer G. Goldman, MD, MS, at jennifer_g_goldman@rush.edu. She may be able to offer some assistance.
Look into vitamin B1 deficiency and the work of Dr. Lansdale and Dr. Chandler Mars. They have interviews on UA-cam. Also the work of Dr Constantine in Italy
إن موصاب اتكسيا اترنوح اتخلوج الحركي اوريد اتكفول منكم مهو الجديد في العيلج منكم
i sometimes feel slow in coordination and moving. is it the symptomps too?
Maybe! First watch your weight. Then if lose weight no reason, you must go to hospital.
I’ve never heard of this.
Hi respected sir mam i m a patient of spino celebelar ataxia plaese provide me proper guidence for sca.
I have too!
Google vitamin B1! read the work of Dr. Lansdale about vitamin B1
I have this too
Wow, so similar to Parkinsonism.
Plot twist....try telling a cop your not drunk.
why you making jokes about this ? fool
@@atillahcaptuc2105 , not sure if they are joking. My fiancée has ataxia and has been arrested for being supposedly drunk. But if they are joking, it’s a shame.
Not funny
but he seems like okay to me
MAA really? He’s wobbly as though he’s drunk.