Sca 29

[Sfullwood68]

Hi I'm new on here my daughter has been diagnosed with sca 29 anyone out there with this type thank you

[Caraxxo]

Hiya I don't have that type but I do have sca 2

[Sfullwood68 in reply to Caraxxo]

Thank you for your reply as parents it's new to us a bit scary to be fair but just trying too support our daughter as much as we can

[Caraxxo in reply to Sfullwood68]

Aww I get that. How old is she?

[Sfullwood68 in reply to Caraxxo]

She's 20

[Junie1984 in reply to Sfullwood68]

Hi, if you don't mind me asking what age is your daughter? My niece also has ataxia however we have EA type 2. She is 8 and does struggle on a daily basis.

[Sfullwood68 in reply to Junie1984]

My daughters 20 and had this since birth but only diagnosed this year

[february]

Dear Sfullwood68, I have Spordic Cellabellar Ataxia (unknown cause, symptoms 24/ 7, progressive, diagnose 12 years ago, although had very minor symptoms starting about 8 years before diagnosis. I'm 62 years young, much, much older than you daughter. I know it's scary when your child has something like this and you feel helpless to do anything about it. May I suggest she exercise for strength and balance, as that really helps me! Keeping as active, safely, as possible slows down the progression and keeps me feeling a good as possible! Eating as healthy (lots of veggies and fruits) as possible is good for general health! Having loving, supportive parents (you) is indeed priceless!!! Welcome to this site and my best to you and your daughter...,;o)

[Sfullwood68 in reply to february]

Thank you its just the unknown with it being very rare not much information out there

[Sunny8088]

My daughter has SCA-3 , its hereditary , In my family 7 persons has it including me , I am 49.

[Sfullwood68 in reply to Sunny8088]

We're just waiting for a letter to go to the genetic clinic to see if one of us has the faulty gene that was passed too our daughter not much out there on sca 29 unfortunately

[Sunny8088]

Yes geneteic blood test is 100% accurate and yes for SCA29 there isn't much info on web

[Sfullwood68]

Her epilepsy that she had as a child is back as well she's finding it quite hard at the minute to digest all of this