Featured in this interview is Heather Lyons, who is 25 and has Laurence Moon Bardet Badel syndrome. She attends the Cedar Foundation in Belfast and is currently waiting to be rehoused in her own place so she can live independently. She is 25 in September.
Hi Heather tell me a bit about yourself
I’m Heather Lyons and I’m 24 years old. I live in Belfast with my parents. I also have a younger sister called Hannah.
Can you tell me about your condition and how it affects you?
I’ve got a condition called Laurence Moon Bardet Biedel Syndrome, we’ll just call it LMBB from now on cause it’s a mouthful! Both my parents are carriers of the gene, that’s how I ended up with it. You are talking about the 80’s here, genetic profiling just didn’t happen and my parents didn’t know they were carriers. It’s like a one in a billion chance of getting it, because both parents need to have it for the child to be born with the condition. And my sister Hannah could also be a carrier but we just don’t know, she’ll need to find out before having kids herself later. My mum said that she herself had a 1 in 4 chance of having another child with LMBB, so she stopped with the two.
Did your parents know about the condition when you were born?
Well I was very sick when I was born, my mum told me that I was blue when I came out, and the doctors thought I had heart problems. She also said I was in hospital for 6 weeks but then they let me go home. Ok, I’d better explain here that LMBB is a progressive thing, the symptoms don’t all show themselves at once, it’s not like other disabilities where you can say you look a certain way or it’s really obvious from the start. It wasn’t until later that all hell broke loose! When I was a baby the doctors just thought it was my heart but in fact it was my kidneys.
What about your early years?
My mum says I didn’t speak until I was three, I think my first word was mum or dad or something boring like that, and she also says I’ve been making up for it ever since! I was late reaching all my developmental milestones but my parents still didn’t know anything was wrong so I went to the local nursery and primary, Fane Street. They were great, let me just say that they picked up straight away that I couldn’t see colours or read and was bumping into things.
Can I ask you about your sight Heather? What are you able to see?
I have about 85% sight loss, which classifies me as blind but I can see shapes in a good light and recognise really bright colours. LMBB isn’t the same for everyone but I have got a condition called Retinitis Pigmentosa and this basically means that my Retinas got overloaded with information and decided to commit suicide. That’s how it was described to me by the consultant at the Royal! I was about 5 when I got diagnosed with LMBB and I don’t actually remember being told it but I remember having to go for loads of appointments. And don’t forget that my mum had a young Hannah to look after so it must have been really hard for her.
I’ve seen some really lovely cards you’ve made for people (including me) so can you still see a little?
Basically I’m a very caring person, my mum always says I care too much and it can lead to me getting hurt. I love giving presents and making cards for birthdays and Christmas. At home I have a big over head light and a table light like the ones from Homebase and I put that right beside my head so I can see the page really close up. This has ended up in me getting my forehead burnt at times! But of course that means I can’t drive which is a real bummer because i’d absolutely love to be able to drive.
Was school ok? You mentioned that you went to a mainstream school.
I loved school, Fane Street was the best, although I did get bullied a bit in the playground. What most people don’t expect to hear is that I love getting homework, I love learning and reading. I joined the Daisy book scheme (a charity that provides audio books) and I basically read all the time. After primary I went to Jordanstown and then to the school for the blind in Herefordshire for one year until the education board decided it was no longer going to fund this. Because I can’t see or read facial expression or pick up on non-verbal communication I’ve always found it hard to make friends, even with other blind people. So I feel pretty isolated at times. My mum and sister keep me sane, although don’t tell them that I said nice things about them!
Do you have any other health problems with LMBB?
Yes when I was in P5 or p6 basically my kidneys started to not work properly, this is another side effect of LMBB. It can affect your eyes and organs as well as your weight and some people have learning difficulties, although luckily I don’t. In fact about 15% of LMBB sufferers are highly intelligent! But anyway, back to my kidneys. The doctors couldn’t get a needle into me for Dialysis so I had to go in for an operation to have a tube put into my stomach and I was then hooked up to a machine every night 6 days a week for Dialysis at home. The other way I would only have had to have it 3 times a week in hospital. This way I was at least in my own bed. It would be on all night, and my mum would have to get up and roll me off it when I set off the alarm every night. I’m such a heavy sleeper that I would roll over onto the tube and set off the alarm but not hear it. That was in 1995.
How long did you have to do that for?
Basically on the 28th August 1996 I got my transplant. You see, when you start Dialysis and are on the transplant list you are given a bleeper, and dad had the magic bleeper. When it goes you drop everything, I mean everything and get to the Royal quick smart. He was watching football or something when it went off, and my mum and Hannah had just got back from shopping for a Barney teddy bear for me because that was what I was into at that age. Mum and Hannah had just phoned 2 seconds before to say they were on their way home and then the bleeper went off, and he said get back here now!
What happened in the Royal then?
Well we met Dr O’Connor who was my consultant and she said she needed to get some samples of blood and tissue and stuff and they came back Ok. I did my last night of Dialysis and couldn’t eat which was awful because I am a big foodie, then I went down very early the next day for my new kidney. I know exactly where it is, it’s just above my belly button. They left the other 2 in there, apparently they don’t tend to remove the kidneys unless there is something really wrong with them like cancer. But I got a kidney and touch wood 14 years later it’s still going strong. Once I got the kidney transplant, even though there is no cure for the eye condition things started to get better.
That’s all I had time for so thanks so much to Heather for being so open about her condition. I’ve put a few links below to sites Heather knows and uses.
Links
LMBBS society
Daisy Books
RNIB
School for the blind Herefordshire
Read also the interview with a mother of 2 Autistic children
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