The first thing I want to talk about is a disease called Epidermolysis Bullosa or "EB" for short. I came upon learning about this disease primarily from two incredible blogs I started reading quite some time ago, and my brain never wanders very far from learning more about the disease and what I can do to help. To learn some more general knowledge on EB you can go to this site.
First of all I should introduce you to the two blogs in which got me started on learning more about EB, and how it effects these children.
First is a blog about Tripp Roth, Tripp was born into an incredibly loving family on May 14, 2009. When he was born his family had no idea what the road ahead of him entailed. They soon learned that Tripp had EB, and a very several type of EB. I could write about Tripp's story for days, but no one can write it better than his own mom Courtney Roth. For an incredibly heart breaking yet motivating story I recommend you click here to read all about it. When you get to the website you will realize that Tripp gained his wings and left the EB fight on January 14th 2012, surviving much longer than the one year the doctors gave him. I dare you to start from the beginning of the story and read to the end, I promise you will find yourself complaining less about those blisters you get after a long night of dancing in those heels you just had to have.
Second is the story of Jonah, Jonah and his family also deal with EB every second of their lives. Jonah's parents Matt and Patrice had already been down a long road by the time Jonah was born and diagnosed with EB. EB is one of those diseases that does not have early detection, you cannot prepare for it or read up on it before the baby is born, you simply get handed it when your child is born. Jonah, Matt and Patrice have done just that, they have taken EB and made the very best of it. I also suggest that you click here and read their incredible story. This family brings warmth to my heart and really, you should just read their story ;)
Every time I find myself thinking about the incredible strength of these children and families I really am just baffled about how much one person or one family can go through. It also makes me incredibly grateful for how EASY my life is compared to this. If you start to find yourself as incredibly intrigued by these stories and want to help go to this website and learn more about Debra of America, and what you can do to help. These two stories are only two of many stories out there so go one research a little more, I dare ya!
This isn't the only disease that's been on my mind lately. I have a very close friend of mine, I actually lived with her for a period of time whom is suffering from the ugliest of eating disorders. It's not only an eating disorder but it's more like a nasty concoction of eating and mental disorders, but anyway...I'm not quite sure what i'm more mad at, the eating disorder or American health coverage guidelines. After checking HERSELF into treatment she spent about 1.5 years working on getting better. Just when she felt like she might finally be on the path of getting past her disorders her insurance tells her that they will NO LONGER COVER TREATMENT. Yes, that's right she got sent back home, to the place where all of these disorders originated from because insurance chose to stop covering her. Now where does this leave her? Well, she can't drop coverage and get new coverage because it's classified as a "pre-existing condition" meaning they can deny coverage, medicaid and medicare aren't the best options because very few places will accept it. Does a girl my age want to lose all of her dignity and go for disability? Probably not.
Do I know every single detail of this? Not at all, but today I really started digging into the details of this and let me just tell you it's ugly. I called places to describe her situation and was told she'd need to wait 4-12 weeks to get approved and then i'd say "this girl does not have 4-12 weeks to wait" and in return i'd get "well, if she's not medically stable we cannot accept her anyways." Time out, how does this work....she's medically stable RIGHT NOW, but if she waits 4-12 weeks I guarantee i'll be close to being down a friend. Should she admit herself to the hospital, probably but the disease inside of her isn't letting that happen just yet. You're probably thinking "why doesn't she just eat something". Well, i'm not an expert but how I look at it is like this...drug addicts when they don't use they go into detox, which is incredibly painful and dreadful. For her, when she eats it's like going into detox, her body is so unfamiliar with food that it HURTS her. Telling her to eat something is similar to telling a meth addict to stop using tomorrow, it's just not that easy.
So in American health insurance guidelines it really is possible for someone to die and suffer even though THEY want help. Do I think I more can be done to help my friend? Yes, and that is what i'm currently working on doing...but really?
RANT OVER
I hope everyone is doing well, and i'm sure everyone is excited that tomorrow is Friday!
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