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My name is Sarah and I live in Ontario, Canada and I would like to take this time to share with you my EB story.
I have been living with Junctional Epidermolysis Bullosa (JEB) for 32 years. For many EB families, parents who have a child with EB are not aware of the condition because they had never even heard of EB before. However, for my parents, they already kind of knew what EB was; as I have an older brother living with EB as well. Like most EB parents, my parents were told that their child would not live past the age of one years old. Well of course, I have proven the doctors and other people wrong. I’m still around and living life to the fullest.
I’m going to explain a little bit about what JEB is. JEB is short for Junctional Epidermolysis Bullosa. The type I have does not cause me to have any hand or foot webbing, and I’m able to eat without the help of a feeding tube. I don’t wrap myself in bandages from neck to toe; I only cover my sores/blisters when they need to be covered. I do my own bandage changes. I am able to walk for a short distance and I am not confined to a wheel chair. Thankfully, I do not live in pain 24/7, and I don’t have to take pain killers every day. I do have some scaring, and all I have to say is that if my scars could talk they all could tell you quite the story of how they got there. LOL!
Due to JEB I have lost my hair, finger nails and toe nails. To me, EB is not a disease but rather a skin condition - since it is not contagious. Also, with in my situation, I feel that EB does not have me, I have it. I’m proud of who I am and I would not change anything in this world.
Growing up with EB…
I was brought up to have respect, to know my manners, and to say yes please and no thank you. But growing up with EB came with some challenges; good ones and not so good ones. I had to be careful of what I did so I would not get hurt. I was not able to play sports, do dance classes or gymnastics. However, I was able to find different things to do to keep me busy.
I learned to ride a bike without training wheels. It took me a while to learn how, but I did it. I loved to swing on swing sets. I liked to try to hit a ball with a bat but someone else ran for me, as I was not all ways able to run because it would cause too much blistering on the bottom of my feet. I liked to bounce the baseball around and play the game H-O-R-S-E. I loved to go swimming in our swimming pool we had when I was younger. The pool water helped my skin and it kept my skin from getting too many infections in the summer heat. I also liked playing in our sand box. I learned how to skip rope and do the hula hoop. I also went to regular school. School was ok. There were times when I was made fun of for the way I looked. I had friends and was able to go out for recess with all the other kids.
In high school I went out with some of my friends to the movies, bowling, mini-golf, to the mall, and sometimes we played pool after school. As you can see, I lived a great childhood. I just did things a little different than some other people. But then again, if we all stop and think about it, every one of us does things slightly differently than the next person. There is no two people the same in this world.
Meeting people with EB…
As I was growing up I really did not think there was anyone else other than my brother and myself that had EB. I really did not meet anyone else until I was 17 years old. The first time I heard of anyone else with EB was when my Education Assistant (EA) at school asked me if I had ever meet anyone else with the same skin condition. So, one day my EA told me she was speaking with someone at DEBRA Canada, and she told them that I would like to be a pen-pal with someone else who has EB. I was given the opportunity to connect and start e-mailing this great, wonderful young lady, and ever since that day we have become best friends.
I recall the day my dad took my brother and I up to see my new friend and her family. That was the first time I truly met someone else that had EB. It was a wonderful time. I’m so grateful and blessed that my EA took her time to help me find someone else that had EB. After that I knew there were other people out there. I started to notice I was not the only one with EB. I was able to get on to yahoo groups, My space page, and EB Facebook groups and I was able to see that there was a quite a few people that I could connect with and get to know. I have to say, I really wish my parents knew more about DEBRA Canada and were able to meet other kids/families with EB when I was younger.
It has taken me a long time to learn to accept myself and EB. It was hard for me to understand why I could not do everything like everyone else. I used to really dislike myself when I looked in the mirror. I used to wish I was like everyone else.
Then one day, after realizing that there were others out there with EB, a light bulb came on. I realized that feeling sorry for myself will not get me anywhere and once I figured that out, I realized it was ok to have EB and its ok to be different than others. I started looking at the positive side of having EB and my life started to get a lot better. I was able to regain self-confidence.
What I’m doing now…
For the past 15 years I have been volunteering at a daycare in my hometown. I started helping them out when I was in school for my school volunteer placement. I discovered that I really enjoyed volunteering. The kids and staff are wonderful people to work with. I help them out from September-June.
When summer begins, I also volunteer at camp in my home town. I had been helping out at the camp for 11 years now. I really appreciate that they accept me and look past my EB and can see that I’m there to help them out, and not there to look for sympathy or to sit around and do nothing. I know the staff and the kids really appreciate and look forward to seeing me each day.
I do not work but prefer to volunteer because I know I would not be able to handle it all the time. That is why I volunteer. I’m really grateful, blessed and thankful for being able to volunteer in my hometown.
I also taught myself how to knit, sew and crochet. I started 11 years ago. For knitting, I use to do it with knitting needles, but it started to cause sores on my hand/fingers from the needles. I was a little disappointed. But I got thinking there must be something out there to help me with my knitting. So, one day I was in Michaels Craft Store and saw a knitting machine. I decided to pick it up and now I’m using the machine to knit. Yes, it is a different way to knit, but hey I’m still able to do it. As an added bonus, using the machine helps to get my projects completed a lot faster.
For sewing, I use a sewing machine, it is faster and easier. I have tried doing it without a sewing machine but the stitches did not look as nice or neat. As well, it caused sores on my hand/finger from the needle. I’m glad someone came up with a sewing machine way back before I was born.
I also taught myself how to crochet. I saw a pattern on the computer and thought I would like to try it out. Well, I picked it right up and it’s like I have been crocheting for years. I learn how to crochet from books and YouTube videos. I have to say, it was really easy for me to learn how to crochet. I’m glad that doing crochet does not cause any sores on my hands or fingers.
I also like to cook and if it was not for learning how to cook in school, I probably would not know how or even like doing it. I love to make chocolate chip cookies, chocolate bumps cookies, apple pie, homemade peanut butter cups and whatever else I can find to cook up. I also enjoy cooking meals from scratch.
I also have grown up with animals all my life. Right now I have a dog and a cat. I also have chickens. My dog and cat are my best friends. My cat’s name is Pumpkin and he loves to get hugs and just sit on me and sleep. I have had Pumpkin for six years now. My dog’s name is Amigo. Amigo has been part of my life for 14 years now. I will have to say he is a one-of-a-kind dog. He knows how to be careful around me. He smells my sores and I know when he does that then I have an infection starting. He loves it when I take him for walks and play games with him. Having animals in my life does not hurt or bother my skin.
As you can see, I try my best to not let my EB get in the way of my day to day activities and the things I like to do. Having EB has taught me to look past at what everyone else has, and look at them the way I would want everyone to look at me. There is a saying I like, “you should not judge a book by the cover” or “you should not judge a person by the way they look”. I have learned how to accept myself for what I have and I feel really blessed and grateful for what I have and for the people in my life. It is ok to be who you are, and it is ok to accept yourself. I have also learned that you can do anything if you put your mind to it.
The reason why I decided to share my EB story…
One day when I was volunteering at work, I had a parent come up to me and ask me if I had EB as the family had learned about the condition on the tv news/ internet and they asked me if there were any stories out there that were positive. They were also curious and asked me how EB effects my life.
They told me that one day their child was learning how to ride their bike, and like most kids learning to ride, their daughter fell off and got hurt. Like most parents, they went over and make sure their child ok. The child said, “I’m ok, I just got boo boo’s like my teacher Sarah, and all I have to do is get back up and try again. My boo boo’s won’t stop me, just like they do not stop Sarah.” When I heard this, I decided to reach out to DEBRA Canada. After a very nice conversation, DEBRA Canada suggested I write something about my EB story. I felt this was important to do because If I could help inspire just one child to think positive and look past the fact that she was hurt; and motivate her to get right back up and to try again…then I think I could write, share and hopefully inspire others with EB to do the same.
Thank you for taking your time to learn more about my EB story.