Know Multiple Sclerosis

One of my primary goals with this site is to raise awareness for multiple sclerosis. MS and many other diseases have had some success with this. Breast cancer has had phenomenal success.

The pink ribbons, the breast cancer month (which happens to be this month, October), the various foundations who sponsor events such as the Bras for Breast Cancer Walk in my town - all of these things bring the topic of breast cancer to people. It is deservedly a very publicized disease.

While MS is much more rare, I think we could all take a lesson from breast cancer supporters. There has to be more that we can do, as patients, caregivers and family members of patients, to raise awareness for this cause.

As I've mentioned before, it is a disease that robs so much from young people's lives. It is truly a cruel disease to present itself just as one is beginning his or her life. Its symptoms vary from mild to severe, leaving patients not knowing how to plan a future that is so uncertain. I'm open to ideas to how to better raise awareness for this cause. It's one worth fighting for.

Posted by admin on October 23, 2007 01:25 AM | Permalink

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I want people to remember this number. It's a number that I try to think about every day. It's a number that should give all of us the motivation to fight for more research, more awareness, more support. This number serves as a reminder of just how big a problem multiple sclerosis has become. It's the number of newly diagnosed patients each week in the U.S. - 200; that's about 29 each day.

For the most part, these are not people at the end of their lives. This disease does not give people the luxury of living the majority of their lives disease-free and then hit them at the very end. Rather, it strikes people right in their prime: most are diagnosed between 20 and 40. It hits a single mother of 2 young children; a man just recently married; a college student. These are people for which life is just starting. MS will change everything for each one of these people.

Multiple sclerosis does not get the attention it deserves. From the healthcare perspective, it costs millions to support people with the disease. From a humanitarian perspective, it strikes young adults at their prime. Just as we focus on children's diseases because we value their potential, we should do the same for MS (incidentally, MS can strike children as well). So much progress has been made with this disease; much remains to be done.

When you go to bed tonight, I ask you to think about the 29 or so people who were told today they have multiple sclerosis and will have it for the rest of their lives. These are 29 people with whom I may have had little in common with yesterday; today, however, we share so much.

Posted by admin on August 25, 2007 03:09 AM | Permalink

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We had a lot of fun at the MS Walk this year in Dallas, Texas. We raised $600 which goes directly to the National MS Society. They sponsor research and support programs and their mission is to end the devastating effects of multiple sclerosis. I'm already looking forward to next year's Walk.

Thanks to the Kitchen 1924 restaurant (which happens to be fantastic) in Dallas for sponsoring the t-shirts.

Posted by admin on April 2, 2007 01:36 PM | Permalink

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I encourage anyone who is looking for a way to help the multiple sclerosis cause to participate in the MS Walk this year. It's an annual event put on by the National Multiple Sclerosis Society to raise money and awareness for MS.

It's in cities all over the country, and is an easy way to get involved. Regardless of how much money you raise, it's a great way to feel connected to others with the disease.

I'll be going to Dallas this year to walk with some friends from college. Good luck!

Posted by admin on March 13, 2007 02:52 AM | Permalink

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I am fortunate to be someone with very little. All I have done to try to make that a reality is take an interferon medication and try to live a low-stress life. I do not kid myself. I have done well because I happen to have a form of the disease that responds well to treatment. I don't deserve this more than anyone else - I've just been lucky. I know that may not always be the case, so I feel tremendous pressure to help the cause for those who need it now, but also for myself as I might need it down the road.

As someone with MS who has done well, I feel an obligation to be a leader and advocate for this cause. I encourage others to do the same. There are a lot of people with this disease. There is a large enough population where we can make a difference. That difference could be raising money for research; helping to support others; or, raising awareness so that others start doing either of those.

If you are reading this and have MS or know someone who does: STAND UP - DO SOMETHING. Regardless of how big or small the contribution - make MS your cause and leave your mark on this world. If you have ideas on how to help, feel free to post them as comments on this site.

Posted by admin on March 6, 2007 02:59 AM | Permalink

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In an earlier entry, Who to Tell?, I mentioned that I don't advertise my MS.  I also said I ask the question, "Who needs to know?" when determining who to tell.

When creating this site, I decided it would be worth revealing my disease so that I could help support others with MS, particularly the newly diagnosed.  I am hoping that, by sharing my own experiences, it provides some knowledge and hope for others.

I still think the "Who needs to know?" question applies.  I just decided that, after eight years, I don't care who knows anymore.

Posted by admin on October 24, 2006 12:47 PM | Permalink

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I found myself trying to find ways to get involved.

I participated in a few of the MS Walks sponsored by the National Multiple Sclerosis Society.  I think the Walk is a positive thing for a few reasons.  First, I was raising money that would go towards research and support.  Secondly, I was raising awareness.  People who knew very little about MS were now finding out since I was asking for money from them.  Finally, the Walk itself was therapeutic.  I enjoyed seeing other people raising money for this cause.  I was able to see a lot of people - some disabled, some not - who have MS.

So now that I've had this for almost eight years, I wanted to share my story and experiences on this website and hopefully get others involved by sharing their experiences.

There are all kinds of activities in which one could get involved.  For me, I found it helpful to get up and do something.

Posted by admin on August 30, 2006 02:01 PM | Permalink

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It strikes me as odd that the majority of celebrities I hear about in the press who have MS are men, while nearly twice as many women as men are affected by the disease.  So that to me suggests that, statistically speaking, there must be some women celebrities out there holding out.  It would be great for the cause if more celebrities reveal they have the disease (providing they're the right kind of celebrity...).

It has been said that multiple sclerosis is common enough that, for every person you know with MS, there is probably someone else you know who also has it but has not revealed it.  That is due, in part, to new therapies that allow many to live normal lives.  It is also due to the fact that many MS symptoms (e.g., fatigue and sensory problems) can be hidden to others.  Those who have the option of revealing their disease are very fortunate to have the choice.

Posted by admin on August 27, 2006 08:14 PM | Permalink

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Celebrity star power is a great way to raise awareness for any cause.  Michael J. Fox has done it with Parkinson's disease.  Christopher Reeve did it with spinal cord injuries.  Multiple Sclerosis is missing a big name advocate.

Yes, we have country singer Clay Walker who has done some good work.  David Lander, Montel Williams, Terri Garr and others have all revealed they have the disease.

But, we're missing someone who can accomplish what Michael J. Fox  and Christopher Reeve have done - increase awareness and thereby significantly increase private and public funding for the cause.  This is a great example of one person having the power to potentially change the lives of thousands of people.  It's for the good of other human beings, and it also helps themselves by the way.  The more press and the more the public hears about something, the more money will go towards it, and the sooner we will find new therapies.

I would like to call on any celebrity who has multiple sclerosis to come forward and, in doing so, help the cause.  I mention in a previous entry that the question I ask when deciding to disclose my MS is, "Who needs to know?"  If you have the opportunity to change the lives of thousands, I think everyone needs to know.  If I were famous (maybe I will be someday), I hope I would have the courage to do whatever was necessary to advance this cause.  At the end of the day, and at the end of our days, what we leave behind for this world is all that matters.

Posted by admin on August 26, 2006 04:38 PM | Permalink

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