October 25 - October 31
What is it like?
By: Jennifer Lyric Bolles
Rdeb, Inversa
What is it like?
To wake up, hop out of bed, throw some clothes on and run out the door to complete errands or just have fun?
What is it like?
To NOT be in pain and no matter how you move, or how many pills you take, that pain is always there.
How does it feel?
To NOT be stared at, whispered about and openly judged by the ignorant masses.
How does it feel?
To ONLY go to a dr appointment because you have a cold?
How neat would it be?
To eat whatever you wanted and not worry that you may cause blisters in your mouth or choke when you swallow.
How neat would it be?
To take a bath and...ENJOY IT!
How much would I love?
To spend a day having fun and NOT worry about being too exhausted to enjoy it.
How much would I love?
To be seen as a person and not someone who bails on most social events b/c "I'm just too exhausted, or in too much pain"
How great would it be?
If I could be free. Free to run, free to play, free to be me.
How great would it be?
If there was a way, to take away pain, at least for a day.
What is it like?
For you to be...you?
Written by: Jennifer Lyric Bolles
RDEB, Inversa
The above is why we need awareness. So that EB is NO LONGER the "worst
disease you've never heard of" and one that is a commonly discussed
medical issue like Autism, ADD/ADHD, MS, Down Syndrome etc...Let's add
EB to that list. The list of medical issues EVERYONE knows about, even
if it is only explained with 2 letters. PSST!!!! Pass it on...National
Epidermolysis Bullosa Awareness Week October 25 - October 31 :)
What is it like?
To NOT be in pain and no matter how you move, or how many pills you take, that pain is always there.
How does it feel?
To NOT be stared at, whispered about and openly judged by the ignorant masses.
How does it feel?
To ONLY go to a dr appointment because you have a cold?
How neat would it be?
To eat whatever you wanted and not worry that you may cause blisters in your mouth or choke when you swallow.
How neat would it be?
To take a bath and...ENJOY IT!
How much would I love?
To spend a day having fun and NOT worry about being too exhausted to enjoy it.
How much would I love?
To be seen as a person and not someone who bails on most social events b/c "I'm just too exhausted, or in too much pain"
How great would it be?
If I could be free. Free to run, free to play, free to be me.
How great would it be?
If there was a way, to take away pain, at least for a day.
What is it like?
For you to be...you?
Written by: Jennifer Lyric Bolles
RDEB, Inversa
The above is why we need awareness. So that EB is NO LONGER the "worst disease you've never heard of" and one that is a commonly discussed medical issue like Autism, ADD/ADHD, MS, Down Syndrome etc...Let's add EB to that list. The list of medical issues EVERYONE knows about, even if it is only explained with 2 letters. PSST!!!! Pass it on...National Epidermolysis Bullosa Awareness Week October 25 - October 31 :)
