From Someone With A Rare Disease, This Is Why The Ice Bucket Challenge Is Important
Take it from someone living with a rare disease: The Ice Bucket Challenge is revitalizing.
To my good fortune, my disease doesn’t leave me handicapped or impaired in any major way. I’m lucky that, until my teens, I had no idea I had a rare disease. But, not so luckily, I watched the disease tear apart my family and then kill someone I love very much.
I have Alport Syndrome, a hereditary kidney disease that affects about one in every 5,000 people.
It’s been years since I lost my father to this disease and I’ve since had time to come to terms with it, but now in my 20s, I’m starting to feel the symptoms. Overall, I feel the same, but I’ve had to change my eating habits and, for a while, I took medication that caused a few side effects.
The change in my lifestyle left me explaining my disease to people outside of my close circle who didn’t know what Alport Syndrome was. When I tell people about it, the reaction is usually along the lines of: “Is it serious?” or “Are you dying?”
To help them understand, I explain how it’s passed from parent to child through the X-chromosome and, since females have two X’s and males only one, males suffer more serious symptoms and die much sooner. Usually, this still confuses people (unless they happen to be doctors or biologists), so I tell them more.
I tell them how my father was partially deaf and blind in his teens and suffered complete kidney failure before he hit the age of 20.
I talk about how he had two transplants and almost died several times, how his two brothers died of the same disease, how meeting my mother prolonged his life, and how having children was a miracle because he was told he would never have kids.
Then, I tell them how those kids now have his disease but because we’re girls, we don’t suffer as badly as he did. Unfortunately, we may someday pass the disease to a son who could suffer just as much or more severely than he did.
I tell them how this disease affects entire families and how little doctors and patients understand because so little research has been done.
It’s a mouthful and not fun to explain repeatedly. I don’t like telling people how my father died when I was 13 and that, now, I have health problems similar to his. And, I really hate telling people not to feel bad for me because there are much worse things in life and that I’ll most likely be fine.
I’ve explained so many times that I feel like a drone. Over time, I’ve even learned to talk about my situation with less emotion so I don’t upset the people to whom I’m explaining it.
Somehow, I end up comforting others about my disease and my painful memories because I’m afraid they won’t know how to process the information.
I can’t even be mad at them because there’s no fault in asking. It sucks. This is why if all people on Facebook and Twitter were to dump ice water over their heads in the name of Alport Syndrome, I would cry in relief.
It would mean that when I said I have Alport Syndrome, these people would have some connection to it, however small.
To just hear someone say, “Oh, I heard about that once,” would make me happy beyond words. And, this is coming from a person who doesn’t need a wheel chair to move around.
So, for those who still don’t see how the Ice Bucket Challenge alone, without donations, is helping people who suffer from ALS, consider how many times a day someone with that disease gets weird looks because people don’t understand what’s wrong.
Consider how someone who used to be independent now depends on family to get out of bed and use the bathroom. Consider how it feels for people not to know what the future holds and, even worse, how the disease will affect the people they love.
Consider the guilt they feel for putting their friends and family through the heartache of watching them lose control of their bodies. Consider how it feels to have to explain this to someone who couldn’t imagine living a life like theirs.
Living with a disease that no one understands or even knows exists is a big part of the suffering. That's why the Ice Bucket Challenge is so important and is helping people more than you know.
Keep dumping the ice. Keep spreading the word. Keep learning. You’re doing something great.
Photo Courtesy: Twitter