Aine Lawlor was a wonderful representative of the 22q11 Ireland and the Rare Diseases community when she spoke at the Mansion House in Dublin at the launch of the updated Easyguide to Rare Diseases in Ireland.
She is pictured here with Minister Simon Harris
Aine spoke about the challenges she has faced along the way and the support she has received, including support from 22q11 Ireland.
Her very moving speech is below
CONGRATULATIONS AINE WE ARE SO PROUD OF YOU!
My name is Aine Lawlor and I am 36 years old. I have a rare condition called 22q deletion syndrome and I was diagnosed when I was 15. Thank you for inviting me here today to speak about my journey and thank you for listening to me.
Before I was diagnosed i was in a dark place.
I felt lonely and I did not have many friends.
I didn’t know how to hold a conversation.
I didn’t know how to talk to people I felt isolated and I stayed in our house all the time and watched tv.
I didn’t know how to voice my opinion.
I was very quiet and I was shy.
I used to play on my own and I used to sit on my own at birthday party’s.
I always thought I was going mad and I thought I was going crazy.
I was delayed at things like
Tying my shoes
Doing reading and writing
When some one told a joke I would not laugh till a few minutes later into to the joke.
Delayed at tasks put in front of me
Delayed riding a bike
In school I got bullied
I think if people like me were diagnosed earlier it would help us get the help that we need to live a good life.
There was no help for my mam either. Even when we got the diagnosis there was really no one there for us.
Everything changed when Mum brought me to France for a conference
It was there that I sat in the audience and learned about 22q.
It was a good idea to be able to learn about it as I found it hard to understand.
The one presentation that I will always remember is Dr Tony Simon’s. When he got up and spoke everything made sense. I even began to realise that was why I was so delayed on things it was because I was struggling. In Tony’s talk he said there are two different types of sides that we have. A coper and a struggler. I sat there and said to mum if only I known all this growing up my life would have been so much easier.
The best thing I learned was that I wasn’t crazy, which I thought I was until he talked about what our brain does and how we cope and struggle through life with 22q, especially with anxiety.
When we came back my mum helped set up 22q11 Ireland and we met other families and we started to have our own conferences. We even had Dr Tony here and one time I did a presentation with him.
I will always have 22q and even though I’m grown up now I still have my struggles. Sometimes I worry about who will look out for me like my mam does, she won’t be around forever.
Some of things I am getting better at like
Concentrating on tasks at hand
socializing with others
learning how to believe in my self
learning how to be confident in my self and learning how to be relaxed and having fun at the same time.
People not knowing about 22q and expecting me to do things that I find hard to do – that can make me very anxious.
Bowling has helped me a lot. You have your shoes on, your ball in your hand and you’re on your mark and the one thing that I have in me head is this voice you’re not good enough before I even throw the ball its telling me this. To kick the voice away I say to my self get lost I am good enough and I get a strike but sometimes this may not happen I may get tense and I can’t strike at all but half way through the game I do and that’s because I have the power to tell that voice to go away that’s what Tony means by a coper and a struggler.
I still get a lot of ear infections and I have arthritis; my joints get stiff and sore, I go to the gym to help with that. I have a part-time job in a creche and
I keep busy. My best support comes from the 22qYEEP group. My mam always says that unless you live with 22q it’s just a number and the families and other people with 22q have lived experience that no one else has.
We know what works best for us. That’s why we started 22q Yeep.
We presented our research at a conference in Barcelona last year. YEEP has helped me so much and I’ve learnt so much from being in the group.
It’s lovely to meet other people who have 22q at the meetings that I go to, it makes me feel like I belong. I hope that this happens for every person that has a rare disease because it really is the best feeling ever.