Have Neurogenic Orthostatic Hypotension or other MSA? Join the LIVE FEED and Watch the annual MSA Patient & Family Conference on Facebook
On October 13-14, the Multiple System Atrophy (MSA) Coalition hosts its annual MSA Patient and Family Conference in Nashville, Tennessee. If you can’t be there in person, no problem. The MSA Coalition is providing a live stream of the event on the MSA Coalition’s Facebook page.
You can join medical professionals, researchers and MSA advocates for FREE online via livestreaming during the conference. Videos will also be available after the conference at the MSA Coalition’s Facebook page.
Each year, the MSA Coalition meetings create an invaluable opportunity for sharing knowledge, insights, and strategies for dealing with the challenges of living with this rare disease. Attendees have the opportunity to ask questions and interact with experts in the field, and also to connect with each other.
“This conference is especially unique in that the topics are selected not by clinicians, but by patients and caregivers,” said Dr. Daniel Claassen, Associate Professor of Neurology at Vanderbilt University Medical Center. “We hope attendees will experience a truly comprehensive conference, and have unique opportunities to know more about treatments and exciting new research in the MSA world.”
Vanderbilt University Medical Center staff and guest speakers serving the MSA community will provide an overview of the disease and future research trends and workshops with practical advice for MSA patients and caregivers. There will also be support group sessions moderated by professionals and MSA Coalition Board Members.
According to the MSA Coalition, MSA (previously known as Shy-Drager Syndrome) is a rare and fatal disorder. Less than 15,000 Americans are diagnosed, but there are an estimate 35,000 undiagnosed at any given time. The progressive neurodegenerative disorder is characterized by a variety of disparate symptoms, such as fainting spells, bladder control issues, tremor, rigidity and loss of balance and muscle coordination.
MSA affects both men and women primarily in their 50s. MSA tends to advance rapidly over the course of 6 to 10 years, with progressive loss of motor skills, eventual confinement to bed, and death. There is no remission from the disease. There is currently no cure available. To read more on Patient Worthy about MSA, click here.
MSA is often known to cause another rare disorder called neurogenic orthostatic hypotension (nOH) that causes low blood pressure to occur upon standing. MSA causes a lapse in the signal normally sent from the brain to tell the nerves to release norepinephrine. When not enough norepinephrine is released when you stand up, your blood vessels, especially in your legs do not contract and your blood pressure stays too low and symptoms appear.
