Daughter has Episodic Ataxia Type 1

[TopMum]

Hello everyone.

I am new to the group. My daughter is 17 and we are in the UK. She wants to go to university next year and we have to start her applications. Has anyone on here been in the same position? We don't know whether we should state in the personal statement that she has EA1 or whether to wait and see if she gets any offers. She manages her problems herself and doesn't need extra help. What she does need though is to feel safe in the knowledge that people around her understand her condition. She has been to the same school for many years and has stayed there for 6th form so she has never had to meet new people who aren't familiar with ataxia. It's so hard to know how to advise her. How have other people coped when meeting new friends? Do you just not say anything until they've witnessed one of your attacks? Or do you tell them straight away and risk them feeling uncomfortable? I'd be really grateful to hear other people's stories in similar situations.

Thank you very much for reading.

[wobblybee]

🙂 If people are slow to respond to your post, contact the AtaxiaUK helpline ( ataxia.org.uk ). It’s likely they may be able to advise you.

[Veteran250 in reply to wobblybee]

Topmum.

I’m no expert, I have Ataxia, I would say....... say nothing until you get offers of a place for your daughter, and wish her good luck from this old man! 😀😘

[cocoa]

Is it possible that she could apply for a course which is near to home, so that she could continue to live at home?

[ConfusedAtaxian]

I am not sure whether or not to tell them beforehand but I wish her lots of luck in her new adventure. Has her old school any advise?