Testing for ataxia before you have symptoms (Easy Read) : University College London Hospitals NHS Foundation Trust

	If ataxia runs in your family, you can get tested to see if you have the genetic mistake for it
	Ataxia is a health condition that causes problems with movement and balance – it can affect walking and balance
	hand coordination
	speech and swallowing
	and eye movements
	A genetic mistake means there is a small change or fault in your genes – the instructions inside your body that tell it how to grow and work
	Deciding to have a test is totally your decision – it's not for family, friends or doctors to tell you what to do
	Deciding whether to have the test
	Your partner Talk it through with them – think about things that might change such as having children or needing long term care
	Your family If you have the genetic mistake, your feelings toward family members might change, depending on the test result
	If you do have the genetic mistake, you may feel differently towards those who also have it
	If you don't have the genetic mistake, you might feel guilty or sad that others in your family do you have it and you don't
	Your children If you don't have the genetic mistake, your children can't get it from you
	If you do have the genetic mistake, your children might get it too
	You can choose how much you want to tell your family
	Your employer You may or may not want to tell people at work about the test
	Insurance companies If you have the genetic mistake, you only need to tell your insurance company if you start having symptoms – until then you don't have to tell anyone that you had the test or what the result was
	Having children
	Some people decide not to have children
	If you do have the genetic mistake, doctors might be able to check fertilised eggs to see if they have it too
	The eggs that don't have the genetic mistake are put into the woman's womb to grow into a baby
	Another choice is to test the baby during pregnancy – this test happens between week 10 and 12 of pregnancy
	There is a small risk of miscarriage
	If tests show the baby has the genetic mistake, you can choose to end the pregnancy – this can be done with a small operation while you are asleep, under general anaesthetic, if you are less than 13 weeks pregnant
	We will only do this test if you agree that you would want to end the pregnancy if the baby has the genetic mistake
	How sure do you want to be?
	Some people don't like not knowing the risk – they feel better when they know what their risk is
	If you do have the genetic mistake, we can't say how or when symptoms will start
	Having the test can make people feel sad or worried – even if the result is good or bad
	Appointments for the test
	You can change your mind at any time
	Bring someone with you to help – they can help you understand and remember what we say
	You will see the same member of staff at each appointment
	Appointment 1 At this appointment we will talk about your family and your chances of getting ataxia
	We help you think about the effect of taking the test for you and others
	We don't do any testing at this appointment
	Some people decide not to go ahead with testing
	Appointment 2 This appointment is 1 month later
	We will talk again about the good and bad sides of having the test
	If you want to go ahead, we will take a blood sample
	Appointment 3 At this appointment you will get you test results – this appointment is always in person
	You can choose to have a friend or family member with you in the room
	We send you a letter confirming your results – you can tell us if you want a copy of this letter sent to your GP
	Contact details
	London Ataxia Centre Internal Box 12 National Hospital for Neurology and Neurosurgery Queen Square London WC1N 3BG
	020 34 48 31 00
	www.uclh.nhs.uk