Marfan Syndrome and me: Esmay’s story of nothing holding her back
Esmay Treen has given us an insight into Marfan Syndrome, a rare condition that only affects one out of 5000 in the UK, and she won’t let the syndrome stop her from being her authentic self.
Her mum Talia, works as an Eye Care Liaison Officer at Birmingham Children’s Hospital and came along with Esmay for our chat.
Esmay said: “Marfan Syndrome is a genetic condition that affects your eyes, your heart, your feet and your skeleton.
“Nothing stops me. Having this condition doesn’t really make me feel like I can’t do anything. No condition should make you feel like you can’t do anything. Having a heart condition and weak bones is quite hard. Sometimes you feel like you get out of breath easily or sometimes you feel like ‘yes I can do this’ and you just carry on and believe in yourself.”
Esmay is treated by our Ophthalmologist, Miss Painter. Esmay said: “I enjoy seeing Miss Painter every six to twelve months to check how my vision is. She is really nice.
“I am visually impaired due to Marfans. My ankles click a lot too. Some people with Marfans can be flat-footed too, so they walk differently from other people and the condition also makes you really tall and quite thin. I have to go to a lot of appointments, and you will be in and out of appointments a lot.
“Having a visual impairment doesn’t impact me that much. The only thing is seeing the board. At the back of the class, I cannot see the board, but if I sit at the very front it will be perfect and clear. Teachers also come in to help me and read things out to me. I get an overlay for my work, which is blue. I also get extra time for exams.
“I think we should talk more and be more aware as a society of these conditions and the medical treatments.”
Esmay uses her condition to support other people. Her goal is to go into a caring profession, helping visually impaired people just like her Mum does. Esmay regularly helps her Grandma, who is blind, with shopping and getting around.
In her spare time Esmay volunteers at Guide Dog events helping facilitate activities including helping to put the special harnesses on the dogs. She plans to volunteer more when she is older. Esmay is a keen freestyle dancer and netballer too in the midst of all of the medical appointments for her ADHD and Marfan Syndrome.
Talia said: “She is literally on the go 24/7. Esmay is currently doing habilitation training to help her with routes to school as she struggles with her peripheral vision and depth perception due to Marfan Syndrome. She got to use liquid level indicators too to help with supporting her vision. She has no fear.”
The young school netballer said: “My conditions can often make me feel anxious and make school harder to focus on. I can sometimes feel not like myself but I mostly feel OK. I feel good. This is me. This is what I am.
“Sometimes I get a little sad and upset about my conditions, but I just get on with my day like everyone else.”
Esmay had a final message to other kids like her, who live with medical conditions: “I would say to anyone with a condition like me that you shouldn’t let anything get in your way even if someone picks on you."
“You should carry on. I used to get bullied for being so tall. I love being tall. I find it amazing. I didn’t let bullies get to me a lot.”