I like to change the focus of this month’s blog entry from my own personal experiences with MSA to a topic that involves the thousands of people across the country who suffer from this rare and deadly disease.
One of the most common problems a person finds as they seek treatment for this disease is a lack of knowledge and understanding by the medical community about the specific nature of MSA and the unique needs of the patient. Perhaps it’s understandable for a doctor who has never seen a case of MSA (most physicians go through their entire career without encountering one – my GP hadn’t) to either fail to diagnose or worse yet, misdiagnose. In fact, many MSA patients are initially diagnosed with either Parkinson’s disease or Multiple Sclerosis, misdiagnoses which results in a loss of valuable treatment time and often counterproductive medical care.
For the first time, an organized effort is underway to heighten MSA Awareness, not only to the medical community but the public as well. To focus attention, March has been designated as MSA Awareness Month. A comprehensive website, www.msaawareness.org has been created as a central resource for physicians, interested parties, and most importantly, patients. This website also acts as a central location where supporters can learn about research, how to make contributions, or simply “spread the word.“
I urge everyone to visit the website and browse through its well arranged content. No matter whom you are: patient, physician, caregiver, relative, or friend - you’re sure to learn more about Multiple System Atrophy and how you can help spread awareness about this debilitating disease.
Thanks Steve & Fran!
ReplyDeleteSo well-stated. And MSA Awareness is, indeed, a fantastic site...
ReplyDeleteI lost my mother to this deadly disease in 2009. Given the lack of available information and a strong determination to keep Mom at home, I had a crash course in MSA and related medical issues. We had some wonderful doctors, therapists, and support. But even they, by their own admission, knew little about this terrible disease. A wonderful doctor at University of PA hospital correctly diagnosed Mom. Unfortunately, it was too far for us to take Mom for regular treatment.
I will gladly share information I found. Believe me, I found out things that the medical professionals and hospital case workers didn't always know! Though Mom is gone, I hope I can do my part to help with awareness and support for those battling this disease. I'm working on an awareness project in NJ at present. If anyone in the area is interested, please visit our Facebook page, Movement for Support & Awareness. And feel free to email me.
My very best to each of you...
I was glad to see your link on the Miracles for MSA Facebook page today. My husband Rick passed away from MSA in May 2009 less than a year after diagnosis with MSA. He was first misdiagnosed with Parkinson's in August 2007. I still keep active trying to make people aware of MSA and I commend you for the outreach you are doing with your blog.
ReplyDeleteGood suggestion on the website, very interesting. My mother has MSA, and I've been following your blog and read every entry since the beginning. I appreciate the time you've put into this, I've found it somewhat consoling, for some reason. Thank you Steve.
ReplyDeleteWe went through misdiagnosis, and all kinds of issues as many professionals were not familiar with MSA. I was Mom's primary caregiver. We lost her in 2009. Now we are trying to address the things you talk about - awareness, education, etc. I won't labor on about it. If you want to learn more about we are doing here in NJ, visit our FB page, Movement for Support and Awareness. Best of luck to you in you journey with this disease...
ReplyDeleteI applaud your dedication to helping get the word out about MSA!
DeleteHello Steve and Fran.. thats a great idea. Im a new blogger mymsachronicles.blogspot... Was thinking of doin the same this month.
ReplyDeleteHugs, A