Sca1

[MadHatter0412]

hi. my name is kate im 29 years old and i have Spinocerebellar Ataxia Type 1. it runs in the family. my mother was 39 when she passed away from it, my aunt in her 50s and my nan in her 60s. i thought having watched the disease go though my family that i would know what to expect, but my deterioration is very different. the certainty i had is gone and i dont know what to expect. ive been to doctors before and they have never really been able to give me an idea of what to expect. i guess i was wondering if someone else out there could help me understand what is next??

[matthew55]

Hey Kate, I'm sorry that I don't know about your condition but I have plenty of experience in every other aspect. You are not alone. 😍x

[jd58]

Hi Kate welcome to the forum

[MNDConnect]

Dear Kate,

I am very sorry to hear that you are struggling to understand your condition and how it will progress in the future.

Usually it would be your Neurologist or Specialist team who would provide you with this type of information.

Unfortunately the MND Association does not have any specific information on Spinocerebellar Ataxia Type 1, however many of our information leaflets do cover mobility and speech problems, so they may contain information which may be useful for you. if you would like to view our information leaflets please visit the link below:

https://www.mndassociation.org/support-and-information/information-resources/information-for-people-with-or-affected-by-mnd/

You may also wish to contact Ataxia Support groups, see link below, who may be able to provide support and information to you.

https://ataxia.org/support-groups/

Please do not hesitate to contact us if we can be of any further help.

With kind regards

Jacqui Anderson
Senior MND Connect Adviser

[MadHatter0412]

matthew55 thank you for that. Mnd is very lonely. It's why I sought out this forum

[MadHatter0412]

MNDConnect
The hard thing is that I have been to 4 separate neurologists and and 2 had never heard of it, and the other 2 spoke to me as though I was a child who wouldn't understand medical talk. I think specialists forget that when you have something like this, you educate yourself, but there is only so may times I feel like translating medial paper from other countries.
It's just been a VERY big question I have cause my deterioration is SO different from my mum, aunt and nan. So I'm left with all these questions and no-one left alive to answer them

[MadHatter0412]

MNDConnect
Hello. I just wanted to say thankyou for the links you gave me. I was actually able to find a group for SCA that I never knew existed, so thank you again 😊🎅

[MNDConnect]

Dear Kate,

I am so very pleased you have been able to find a group for your condition. I do hope that you will soon have some answers.

With kind regards

Jacqui
Senior MND Connect Adviser

[matthew55]

Hey don't forget us 😁x