Home » February is Ectodermal Dysplasia Awareness Month » I’m like a mermaid – I can’t cry tears

I’m like a mermaid – I can’t cry tears

Elsie is a 6 year old girl with blonde hair tied back, smiling into the camera cuddling a pink pig teddy. She has her face painted with a wave and a penguin swimming

My name is Elsie and I have EEC syndrome. It doesn’t mean there is anything wrong with me. I think it’s just a thing that makes you special in a different way.

It makes me special because it affects me with my words, like saying words with ‘m’ in them, I find my pronunciation is not as good. I was born with a bilateral cleft lip and palate which makes me sometimes say words with ‘m’ in them wrong. It doesn’t really matter if people can understand what I’m trying to say.

I have regular hearing tests because having a cleft can cause you to have hearing problems, but my hearing has been quite good.

EEC means two of my fingers were joined together when I was born. When I was two years old, I had surgery to take my two fingers apart. They put a pin in my index finger to make it straight. It does not stop me from doing anything, I can do gymnastics, swimming, and even play the piano.

Elsie has blonde hair and she is stood smiling into the camera with blue sunglasses on and a light blue coat. She is stood in front of a blue and red decorated christmas tree with a clock in the middle

I’m like a mermaid because I can’t cry tears, and mermaids can’t either. I must have eye drops; I have them 8 times a day.

I only have 1 kidney, so I must drink lots of water, and I can’t

have a lot of salt! I am not very good at drinking water.

I don’t like hot or cold weather. If it is hot, I get really hot and if it is cold, I am freezing. I get rashes when I am hot. I wear my sunglasses when it is sunny because the light hurts my eyes. I wear them in the mornings to watch television until my eyes have got used to it.

I go to a hospital in London every couple of months to see doctors. I like going on the Tube train and sitting on the top of the double-decker bus. I see a speech therapist every month and we play games. We sometimes video call her at school. I have an adult at school that does speech therapy with me. I have had 5 surgeries at GOSH and Broomfield.

Elsie is wearing a pink peppa pig cap and is lifting it off her head with one hand, using her other hand to wipe her eye. She is face on to the camera wearing a light pink top with rainbow writing on

At school, I like reading and English, and I want to be an author and illustrator when I grow up. I have lots of friends and I am happy being me.

People think I’m brave, but I’m used to it. I am lucky I have friends and I don’t get bullied. If I get bullied in the future I don’t care, because you can ignore it and the bullies won’t be successful and will go away. You should also tell someone you feel comfortable talking to about it.

Elsie, aged 6 ¾