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Rare Disease Day 2018

Did you know multiple system atrophy (MSA) is one of approximately 7,000 known rare diseases? Additionally, about 80% of MSA patients have a secondary rare disease, neurogenic orthostatic hypotension (nOH), which is low blood pressure upon standing. While only 13,000 Americans or so have been diagnosed with MSA at any given time, 30 million Americans or 10% of the U.S. population suffer from these often misdiagnosed and often poorly understood conditions. Of course, the numbers are much bigger when the entire world is included.

According to the National Organization for Rare Disorders (NORD), “People with rare diseases have tremendous unmet needs, including misdiagnosis, a long time to finally receive a correct diagnosis, and when they do, 95% have no treatment with ZERO CURES.”

Does NORD’s statement ring true for your process of being diagnosed with MSA?

We often hear that it takes as many as 4-5 years for those with MSA to be accurately diagnosed. Often, a diagnosis of Parkinson’s disease is first made, but it progresses much faster than PD and prescribed treatments are less effective.

Were you first diagnosed with PD?

How long did your MSA diagnosis take from first symptoms?

If you are frustrated with how long your diagnosis took or a lack of treatments and a cure for MSA, then Rare Disease Day is for you. Rare Disease Day offers the opportunity for all those affected to band together, millions strong, to raise awareness. On this day, the MSA community with thousands of affected families can amplify our voices and make a difference. Whether it’s explaining to your network what it is like to suffer from a little-known disorder or writing to your representatives in Congress asking for more research, you can make a difference. Together. with the other 7,000 rare diseases, the noise will make a difference. But… you need to participate!

What will you do on Rare Disease Day today to help raise awareness for MSA, nOH, and rare disorders as a whole?

“Rare Disease Day® takes place on the last day of February each year. The main objective is to raise awareness with the general public and decision-makers about rare diseases and their impact on patients’ lives.” As a person with or affected by multiple system atrophy, it is critical that your voice be heard. So, whether you are a patient or have a loved one with MSA, it is time to speak up. Share your story on your Facebook page and be sure to tag both the MSA Coalition and NORD. We also encourage you to visit NORD’s Rare Disease Day website and to use their various tools to raise awareness for MSA and all rare diseases.

Awareness tip: When advocating, don’t just say MSA, instead say or spell out multiple system atrophy.