Share Your Story: “Amelia’s Story”

A young Canadian shares her eczema education speech

Recently, ESC received a heartwarming letter in the mail – Patricia, a mom from Ontario, wrote to tell us about her daughter Amelia’s act of kindness: donating the proceeds from her craft fair to ESC. Amelia has eczema and also gave a presentation about her condition to her class. She wrote and gave a speech on what it is like to live with eczema, and her and her mom have kindly given ESC permission to share it with you. We feel it is an excellent example of how one voice has the power to make a big difference.

Scratch, scratch (get a back scratcher and use it, then sigh happily)

Dear classmates, today I am going to talk you about eczema. If you have eczema then you know what I am talking about. Eczema makes your skin feel like it is on fire; like you can’t stop scratching. It feels awful; believe me, I have it, and you don’t want it!

So, what is eczema.

I’ve had eczema since I was a baby. Sometimes it is ok, and sometimes it really is not. Some of you have asked me why my skin is red, or why parts are rough. I thought I’d tell you all you could ever want to know about eczema, starting with its name!

Eczema comes from Ancient Greek words (ya, it’s been around a long time!): Ek means“out of” and zema, means “boil”, so eczema means “thrown out from heat.” Boy, were those Ancient Greeks onto something! Eczema is a fire on the skin!

About 20% of kids have eczema. That is 1 in 5, so in our classroom 4 people could have it. Most kids get it before they are 5 years old. For some kids, it goes away on its own. This happened to my sister – lucky! For the rest of us, we will likely live with it forever.

There are many different types of eczema, but what I have is called Atopic Dermatitis – a fancy name for yuck! This is the most common type of eczema. It looks like a red, itchy rash and often appears on cheeks, arms, and legs. Some people say the rash is angry! Eczema can show up anywhere; on the scalp, on the eyelids, on your back, on your hands and feet. Anywhere there is skin, there can be eczema. Atopic dermatitis is not contagious, but it is chronic. Which means if it goes away, it will come back. It is kind of like whack-a-mole.

No one really knows what causes eczema, but if you have it, you could have two things: allergies (check!) and asthma (check!).

So, what is it like living with it?

I do not like eczema at all. It is hard living with it, because it really affects my life. Getting ready for anything takes longer, because I must always moisturize and put medication on. Sleeping is really hard when I am having a flare up, because I am so itchy, it is hard to fall asleep and stay asleep. So, what do I do? I don’t sleep. This means I am tired. It is hard for me to focus when I am tired or itchy, so that can make school hard. When I get nervous, I often get itchy. I am tired of mommy and daddy telling me not to scratch. Imagine being bitten by a thousand mosquitoes all at once. Now imagine not scratching. That is what it feels like. But I am learning not to scratch… too much. I also have to be very careful not to get a skin infection, because that can make me really sick.

We have tried many things to get rid of it, but we are now just trying to handle it. We have a lot of ointments to use; things for when my skin is OK, not so OK, and really not OK. I have a paediatrician, family doctor and dermatologist. I like going to the dermatologist cause she’s at Sick Kids in Toronto, and my family always makes that trip fun for me.

You might be feeling sorry for me now, but please don’t. We all have something not fun in our lives; some just have more than others. That is what I want you to know. And, in the words of Barbie, from A Mermaid’s Tale, “What makes you different just might be your greatest strength.” Thank you.

ESC sincerely thanks Amelia for sharing her story. If you are struggling with eczema and need support, please contact us at info@eczemahelp.ca or visit us at eczemahelp.ca or on our social media channels.

Note: This submission was received prior to the COVID-19 pandemic.