I'm about to say something sacrilegious if you knew where I work... Good thing I keep my work life separate from my blog? Perhaps... But I've never been into awareness weeks, or months. Why? Because the day/week/month comes and goes, and very few remember it.
I'm assuming most of you are totally unaware that this is MS awareness month/week depending on what source you are looking at... which perfectly illustrates why these awareness periods don't excite me, since we can't even agree on whether it is a month or a week!!!
Here's the thing, I get down on these weeks and then I remember the ice bucket challenge that tore through all social media news feed for weeks. Basically that was one guy making one statement and not realizing the impact it would have to raise awareness for ALS. I honestly don't think anyone was expecting the world to take it by storm in such a way. I watched people's reactions to this challenge and simply chuckled. Some people were angry that their cause didn't get quite the attention, some people were annoyed that their news feed on facebook was clogged with hilarious videos of their parents dumping buckets over their heads, some people laughed hysterically when Bill Gates created an ALS ice bucket contraption to spill water over his body... You know what? Regardless of the reaction that people had regarding the challenge, it got everyone's attention and now more people are aware of the struggles people face day to day as a result of ALS.
I often wonder why I am not so clever. I mean really... had I thought of dumping a bucket of water over my head because I have MS and want to raise awareness, perhaps the MS society may have realized similar increases in funding. The reality is that I am not so clever and so, instead I write my blog post for my five readers... And knowing that I may have raised awareness of one is enough for me...
So why does MS awareness really matter to me? Well quite honestly, it is because of the people who are more impacted than myself. It was so hard for me, being a person with MS, to watch the women and men who came out to cheer on the riders at Pedal 2 the Point last year. It was hard to watch them in their wheelchairs, with their canes, walkers, even the other riders who were wearing their 'I ride with MS' jerseys, and not wish away their struggle. Going from perfectly abled to less so has to be a trip, and not one of leisure.
So here are the stats, totally unsited, but out there to find if you like google:
- Approximately 500,000 people in the US live with Multiple Sclerosis. Amazingly, I have two cousins with MS and an old friend from girl scouts living with MS. Those are the only people I know personally with the disease.
- MS drugs rank near the top of specialty drug costs for employers. Shhh... don't tell my employer this!
- The average cost for an MS patient a year, in medical expenses, is $30,000. Now, don't be freaked out by this, as you have to consider the more severe cases skew that dollar amount upwards fairly significantly (thank goodness, that could really make me poor, not just broke).
- MS ranks second to congestive heart failure as it relates to costliness.
- My siblings have a 1-3% chance of developing MS, which is why I tell them to spend some time in the sun!
- Vitamin D deficiency is a common problem with most people who have MS. Unfortunately, I am so fair skinned, being out in the sun is not an option for replenishing my vitamin D stores, but vitamins are!
I could go on with the statistics for awhile, but I'll stop there since I have no interest in siting all of these sources. I think what I am trying to illustrate is that MS is expensive, and really anyone can have the disease.
Now, I'm not going to go and dump a bucket of water on myself, or jump out of an airplane to raise awareness... Instead, I am going to ask all of my readers to take a moment and talk to someone you know about MS. If I am the only exposure you have had to this disease, then go ahead and share my story. My elevator speech would go something like this:
I'm a 35 year old woman living with MS. I'm lucky because I can still do everything I love to do, although I may not feel my toes while doing it! I want to continue doing what I love (running, swimming, cycling), and currently there is no guarantee as MS progresses differently for everyone and there is no cure. I don't feel sorry for myself (most of the time), and I will continue to challenge myself physically and mentally. I want to find a cure, but not for myself, rather for the thousands of people who are not as lucky with me. Tomorrow, I will go out and run a few miles, and dedicate those miles to every person I know (and don't know) who has MS. Why you ask? Because I can!
I'm assuming most of you are totally unaware that this is MS awareness month/week depending on what source you are looking at... which perfectly illustrates why these awareness periods don't excite me, since we can't even agree on whether it is a month or a week!!!
Here's the thing, I get down on these weeks and then I remember the ice bucket challenge that tore through all social media news feed for weeks. Basically that was one guy making one statement and not realizing the impact it would have to raise awareness for ALS. I honestly don't think anyone was expecting the world to take it by storm in such a way. I watched people's reactions to this challenge and simply chuckled. Some people were angry that their cause didn't get quite the attention, some people were annoyed that their news feed on facebook was clogged with hilarious videos of their parents dumping buckets over their heads, some people laughed hysterically when Bill Gates created an ALS ice bucket contraption to spill water over his body... You know what? Regardless of the reaction that people had regarding the challenge, it got everyone's attention and now more people are aware of the struggles people face day to day as a result of ALS.
I often wonder why I am not so clever. I mean really... had I thought of dumping a bucket of water over my head because I have MS and want to raise awareness, perhaps the MS society may have realized similar increases in funding. The reality is that I am not so clever and so, instead I write my blog post for my five readers... And knowing that I may have raised awareness of one is enough for me...
So why does MS awareness really matter to me? Well quite honestly, it is because of the people who are more impacted than myself. It was so hard for me, being a person with MS, to watch the women and men who came out to cheer on the riders at Pedal 2 the Point last year. It was hard to watch them in their wheelchairs, with their canes, walkers, even the other riders who were wearing their 'I ride with MS' jerseys, and not wish away their struggle. Going from perfectly abled to less so has to be a trip, and not one of leisure.
So here are the stats, totally unsited, but out there to find if you like google:
- Approximately 500,000 people in the US live with Multiple Sclerosis. Amazingly, I have two cousins with MS and an old friend from girl scouts living with MS. Those are the only people I know personally with the disease.
- MS drugs rank near the top of specialty drug costs for employers. Shhh... don't tell my employer this!
- The average cost for an MS patient a year, in medical expenses, is $30,000. Now, don't be freaked out by this, as you have to consider the more severe cases skew that dollar amount upwards fairly significantly (thank goodness, that could really make me poor, not just broke).
- MS ranks second to congestive heart failure as it relates to costliness.
- My siblings have a 1-3% chance of developing MS, which is why I tell them to spend some time in the sun!
- Vitamin D deficiency is a common problem with most people who have MS. Unfortunately, I am so fair skinned, being out in the sun is not an option for replenishing my vitamin D stores, but vitamins are!
I could go on with the statistics for awhile, but I'll stop there since I have no interest in siting all of these sources. I think what I am trying to illustrate is that MS is expensive, and really anyone can have the disease.
Now, I'm not going to go and dump a bucket of water on myself, or jump out of an airplane to raise awareness... Instead, I am going to ask all of my readers to take a moment and talk to someone you know about MS. If I am the only exposure you have had to this disease, then go ahead and share my story. My elevator speech would go something like this:
I'm a 35 year old woman living with MS. I'm lucky because I can still do everything I love to do, although I may not feel my toes while doing it! I want to continue doing what I love (running, swimming, cycling), and currently there is no guarantee as MS progresses differently for everyone and there is no cure. I don't feel sorry for myself (most of the time), and I will continue to challenge myself physically and mentally. I want to find a cure, but not for myself, rather for the thousands of people who are not as lucky with me. Tomorrow, I will go out and run a few miles, and dedicate those miles to every person I know (and don't know) who has MS. Why you ask? Because I can!
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