Sex and relationships
The most common ataxia in the UK is Friedreich’s. The average age of onset is 15. Puberty is generally seen as the start of adult life, including sexual life. Your body develops its sexual characteristics. During the teenage years, we are obsessed with our bodies - how it compares to everyone else’s; how it ‘should’ look. If you have Friedreich’s or another early onset ataxia, this may also be the time when impairment to your mobility and/or speech becomes noticeable.
“I was diagnosed when I was 14. It was hard being in school and being so young and kind of knowing what was going to happen to me. I got a lot of hassle because of the way I came across to people. They thought I was drunk or on drugs.” Max
Ataxia can make you feel very isolated. There seem to be far fewer opportunities for you to mix and make contact with new people. It’s harder to join in when you can’t hop on a bus.
If you remain at home, you may feel you have no privacy or control. Some parents cannot cope with the idea that their teenage son or daughter who has ataxia also has sexual feelings.
Having ataxia gives a sharper edge to 'standard ' teenage issues. Feeling isolated – or cutting yourself off – is quite common.
I started drinking a lot. I cut myself off from my friends, thinking that they wouldn’t want to be seen with someone like me, so I spent a lot of time on my own. I found it hard to talk to people without them getting upset or with me having to explain the whole situation because they had never heard of Friedreich’s ataxia. Max
Max found his solution through music. Other people with ataxia have made other choices. What may help you is to talk to people who’ve been there before, who understand because they have ataxia too. See Making Contact.
Sexual intercourse
There hasn’t been much research on whether having an ataxia affects someone’s ability to have sex. A recent study of people with inherited and non-inherited ataxias (including a large proportion of people with Friedreich’s ataxia) reported that some people did experience sexual problems - erectile dysfunction in 30% and lowered libido (sex drive) in 13%.
There is some anecdotal evidence (based on reports rather than scientific surveys) of impotence among some people with ataxia, perhaps for psychological reasons. If this is a problem it may be worth talking to your doctor. There are things that can help, including medication and sex therapy.
Practically everyone, whatever their age, and however confident they pretend to be, finds it embarrassing to talk about sexual problems – try to remember this, if you find it difficult.
Pregnancy
To our knowledge there is no evidence of any specific problems with fertility in people with ataxia, nor any problems with pregnancy. In fact we know a number of men and women with ataxia who’ve become parents. A study back in 1986 looked at 17 women with Friedreich’s ataxia who were pregnant and concluded that there were no particular complications. Always talk to a doctor about any medications you may be taking, as some medications could harm the foetus.
Genetics and Ataxia sets out the statistical probability that your children will inherit ataxia, if the ataxia in your family is an inherited type.
Contraception
If you want to take the pill, always talk to your doctor about any other medications that you may be taking. For example, some people with ataxia may have seizures and may be taking anti-convulsants; these interact with the oral contraceptive and are a risk to the unborn child.
Further Information
“Growing up, sex and relationships: a booklet for young disabled people” can be downloaded from Contact A Family.
There are also downloadable booklets for parents and teachers.
These publications include excellent sections of other useful organisations. Check out the final pages of each publication for links to websites for young disabled people, information on sexual health, information on relationships, contraception and local service, and sites for young gay people.
Sexwise is a helpline that offers free, confidential advice on sex, relationships and contraception. Anyone under 18 can call.
Other useful sites include the BBC, which includes tips on building confidence and has a very good selection of counselling services.
If you want to see your story, poem, ideas or review here, email alex@ataxia.org.uk.
Ataxia UK, Lincoln House, Kennington Park1-3 Brixton Road London SW9 6DE, United Kingdom
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