Step daughter has just been diagnosed with Friedreichs ataxia....

Hi all, Meg is 13 and has been struggling with balance and falling since about 2013. Initially we were told that she may have HSP and after a referral to Oswestry and a lot of blood tests she has just been diagnosed last Friday....

It's kind of a relief to know what we're facing but a big learning curve so any advice or pointers gratefully received!!

Thanks 😊

[HarryB Administrator]

Hi Mikeroo

Thanks for your post. I am so sorry Meg and your family are having to go through this. I was diagnosed when I was 15 (nearly 25 years ago) and I remember how absolutely scary, devastating and overwhelming it was, particularly as my family, friends nor I had ever heard of ataxia. But there is plenty of support and information available...

I would recommend joining Ataxia UK. You can either join online at ataxia.org.uk or phone/email the helpline 0845 644 0606/[e-mail]. There are many benefits to joining the charity which is free and there is also a wealth of information on the website.

Please read the 'Newly diagnosed' section on the website at the following link ataxia.org.uk/newly-diagnosed

Go to the following link ataxia.org.uk/Pages/News/Ca... and download the 2 publications 'Ataxia:What's that' and 'Ataxia:a parents' guide.' Hopefully these will be helpful to you.

Also there is a leaflet specifically about Freidreich's ataxia (FA) at the following link ataxia.org.uk/ataxia-types1. Click on 'Freidreich's ataxia' typed in blue.

There is a closed Facebook group for parents of children with ataxia to chat with others in a similar position. If you email [e-mail] they can arrange for you to be added.

And of course, always feel free to post/ask questions on here.

I hope this is helpful to you.

Best wishes

Harriet

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Hello! Harriet gave you the best advice, beleive it or not, you will always remember her response After your initial euphoria at a diagnosis "wanes" (sorry it will) GET Health Insurance. Get a financial planner. Life will be expensive in the future, plan for it now. I am 47, I have Episodic Progressive Ataxia, I've had this since birth, I was originally diagnosed with FA, I can't tell you how bewildering it has been. Some of the internet "stuff" is soo negative and some is truly "over the top" promising. In reality you can only pray for in the middle. Love your little girl, lots. She has a different set of challenges and will ultimately draw strength from you. Iwish you all the best ~ there is a lady on here with FA pm her ♡ Julie

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HarryB Hidden Hi both, thanks for your replies and the advice I really appreciate it!

Lots of reading to do but it's good to know that there is somewhere to go where people have an idea about what's going on....

My wife and I have both signed up with Ataxia UK and will go along to one of the local meetings too.

I'm sure we'll be back with questions at some point!

Thanks again,

Mike 😊

[Iain_100]

Hi Mikeroo - you'll get amazing, and very practical, support here. From people who know exactly what you/Meg will be experiencing.

Wishing Meg well for the future

[Hidden in reply to Iain_100]

Thanks Iain, much appreciated.... It's nice to have had such a positive response! 🙂