Triple Olympian Lisa Curry is calling for volunteers to take part in the world's largest genetic study on eating disorders, five years after the disease took the life of her daughter Jaimi. The groundbreaking study aims to identify genetic risk factors influencing the disease and transform treatment.
00:00So this study came in front of me quite coincidentally and when I read about it I was actually very excited to know more about it because as most people know my daughter passed away nearly five years ago and you know she battled with an eating disorder for 18 years of her life and it was very difficult to watch that happen.
00:26It was difficult to watch a beautiful young woman basically lose her soul, her joy and everything in life and there was no answers and I think parents and people who are suffering deserve to have some answers and so when this study came across me and as an opportunity to be involved I really did feel like I needed to be part of it because to me there is you know hope at the end of the tunnel for a lot of people.
00:56And unfortunately it's too late to Jamie but maybe other people can you know save their loved one through knowing how this hideous disease starts and manifests.
01:07It was really a heavy load to carry for my daughter because she'd say to me mum why did I get this?
01:13What is wrong with me and I could never answer that question for her with EDG2 doing this study and needing 4,000 volunteers where they need to identify hundreds of genes and they've already identified eight but they need to identify hundreds more.
01:29This is where the research is so important and I encourage everyone who has an eating disorder now who has had one in the past or even think that they might have one to get involved, volunteer, do the survey, do the saliva test, be part of the solution.
01:46You touched on losing your beautiful first born daughter Jamie to these long term health challenges she battled it for 18 years I guess this is also important for her legacy as well as for future patients.
02:01Absolutely and Jamie often said to me mum when I get through this I want to help other people and so of course she's not here she's not here to lend her voice and of course we know her the best and we can be that voice for her as well.
02:15The mental health mental illness that they suffer every single day where you know it destroys their soul so much that they can't even feel worthy in this world and knowing what sort of person she was she's such a beautiful person with so much to offer but this hideous disease just drains them of their very being of their soul and it's so hard to watch and I know there's a lot of people going through it right now so it's difficult for the family to watch them dissolve
02:44and you feel helpless and you feel helpless and you feel helpless and we tried so many things but you know nothing worked for us.
02:55It is though imperative isn't it that we try and find some answers for what is such a debilitating condition.
03:02Lisa what's your message to other mums and other people going through this right now?
03:08Yeah you know I've been asked so many times by people through messaging, emails, phone calls, people on the street come and see me and ask you know what can I do for my son or my daughter and if I had the answers I would be screaming them from the rooftop but
03:26I've realised that the only real answer from parent to parent is to just love them and as simple as that seems it means like just take them by the hand and sit in nature or sit at the beach and you don't even have to say anything because they already feel shame, they feel a stigma, they don't want to be judged, they are in a hideous cycle of this disease and they just need to be loved unconditionally
03:54because you can't reason with them because you can't reason with them you can't argue with them you can't suggest anything because they're not in that headspace when it grabs them so hard there's like there's nothing you can do the only thing you can do is to love them hold their hand and tell them how much they are loved and you know some people have got through it some people are living with it still and some people don't get through it so no matter where they are on their journey
04:22you just have to love them
04:25Lisa, beautiful words there, thank you so much for talking to us about this I know that this is such a deeply personal thing for you and what you're doing is amazing so thank you so much
04:36Well I thank everyone for being involved and I think Jamie would love to thank everyone for being involved too because I know for a fact she would hate this to be happening to other people she was so empathetic to other people
