This week is Glycogen Storage Disease awareness week.
Glycogen Storage Disease is a condition where you are missing the enzyme needed to turn glycogen into glucose. It is rare, invisible and as of right now there is no cure.
I am one of the people affected by Glycogen Storage Disease.
Living with GSD means my body can store glucose as glycogen in my body, but can't retrieve it. When I am without glucose, my blood sugars will drop which can result in a seizure, coma or even death. To maintain my blood sugar levels throughout the day, I have to eat every few hours, and must drink a mixture of cornstarch and water. It sounds crazy, but cornstarch is a slow releasing starch, making it possible for my blood sugars to stay stable.
Having GSD means I live my life by the clock. I'm always having to check in with myself, make sure my blood sugars are stable, and have access to food and my cornstarch.
I'm occasionally late, have to leave events early, and I tend to leave a little trail of white powder on counters and the front of my shirt.
It's not a glamorous life, but it's my life.
Something I want to bring awareness to this week is called the Cornstarch Challenge.
You've probably heard of the ALS ice bucket challenge, and this is similar.
The challenge is simple: make a video of yourself drinking two tablespoons cornstarch in water. That's it! It's such a small thing to do, and it gives people the chance to see what I do on a daily basis.
When I linked up the challenge on my facebook wall, I nominated a few family members but wasn't anticipating huge results. The ice bucket challenge is still continuing to be a huge thing, and I didn't think there was room for another challenge for people to care about, participate in and donate to. I kept my hopes small, as to not be disappointed.
To say the results have greatly exceeded my expectations would be an understatement.
Currently there are people from all over the world participating in the challenge. Many family and friends of mine have shared the message, have taken the challenge themselves and have donated to try and help find a cure.
There are people I haven't even met but who are somehow connected to me that are participating in this challenge, and showing their support for me and for all the others out there with this disease.
I am amazed by the outpouring of love and support.
While this challenge is about raising awareness and finding a cure for GSD, it's more then that for me.
It's about seeing friends and family stand by me. Having an illness is lonely, and you often feel like you are walking this journey in isolation. I have often felt like I'm living in a whole different world. No one quite understands the daily struggles of a patient with GSD and his/her family. Things are the same in so many ways and yet they are so different.
This challenge, for me, is about seeing everyone who has raised their glasses and chosen to stand with me in my fight. I am brought to tears by the number of people who have stepped in and said "You are not alone."
I was told by my aunt not long before I sent out the link to the cornstarch challenge that one person can make a difference. And while my passion is bringing awareness to GSD and other illnesses like it, and letting others know they are not alone, I didn't set out wanting to change the world. What I found out during the few days since I've sent out the link was that yes, one person can make a difference, but also that when we stand together amazing things happen.
Light can break through darkness. Hope can penetrate despair.
I want to personally say a huge thank you to everyone who has participated in this challenge. Your support means the world to me, and I cannot express how grateful I am. You all make me feel like the luckiest girl in the world. Because of you, I have the strength to keep fighting.
And I would also like to encourage anyone out there who hasn't yet done the challenge to do so. I nominate you! If you can donate to help find a cure, great, and if not just seeing your videos and knowing I have your support means so much to me.
I've included some information about GSD and the Cornstarch Challenge, if anyone wants some more information.
I believe that when we stand together, we can make a difference. Who's with me?
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