Ataxia Type 2 and employment

[William_Lambson]

Hello group, my names William and i have EA2. I'm 28 years old and have been working all my adult life.

The last year i have seen the number of attacks go up. i used to maybe get four or five attacks in a year, sometimes less. Been putting it down to stress. but now my employer wants to know more. Does anyone else hold down a job who has EA? And is there any help for us?

[HarryB Administrator]

Hi William

I have an ataxia of unknown cause. I am 38. I have recently taken early retirement on medical grounds. My first 'port of call' was my neurologist to discuss my work with him (I knew I was really struggling at work) and to see if there was anything he could suggest that would make my life easier and he referred me to a neurorehabilitationist who was very helpful. I also self-referred to Occupational Health who were also very helpful and saw my GP regularly throughout the whole process. Although I ended up taking early retirement I know I sought all the correct advice before doing so.

My advice would be speak to your neurologist first if possible and talk things through with him/her before speaking to your employer.

Best Wishes

Harriet

[William_Lambson in reply to HarryB]

Thanks Harriet. I am concerned because I have a mortgage. I worry that I might lose my job over it. Another worry is I'm married, and we are starting for a family. 50% chance I can pass on the defective gene, she's not worried about it , but I am.

Thanks again Harriet. I will book in to see a neurologist.

[february]

Dear William, Although I do not have EA2, I have Sporadic Cerebellar Ataxia (unknown cause/symptoms 24/7). I'm much older then you (61), and medically retired nine years ago (after working as a social worker for 28 years) due to my ataxia symptoms progressing. I do understand your concerns with your employer and starting a family, as well as obligations (mortgage). As HarryB said, talk to your neurologist first. My best to you! I hope everything works out!..., ;o)

[SueMillman Partner Ataxia UK]

Hi William, Neurosupport, although based in Liverpool offers employment advice and support and will advise you on the approach you should take with your employer. neurosupport.org.uk/support...

You might also find it helpful to join a trade union as they would both offer advice and should take up your case you are subject to any discrimination under the Equalities Act. Good luck Sue