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Advocating for Change: The Urgent Need for Increased POTS Research Funding

We're in DC advocating for more research funding for POTS. We’re here for all those who couldn’t be here.

POTS used to impact 3 million Americans before Covid, but now it impacts at least 6 million Americans. And that’s a conservative estimate.

That’s 6 times as many people as MS impacts. Yet MS receives significantly more funding.

The National Institutes of Health (NIH) received over $47.5 Billion from Congress this year for medical research. Yet NIH directs less than $2 Million a year for funding research on POTS.

More funding would mean more research. More research would lead to more understanding of why this is happening, treatments, and more healthcare professionals knowing about POTS.

I started having symptoms in high school, but it took until AFTER university to get a diagnosis. Throughout those years, I got progressively worse, and I had no idea what was happening.

Doctors' reactions ranged from telling me it was anxiety to them telling me I’m at risk for a heart attack and giving me medications to prevent a heart attack.

I got diagnosed after I figured out its POTS and requested a tilt table test. By that point, I couldn’t shower or grocery shop anymore, and every move triggered symptoms.

I was fortunate that I reacted well to the medications.

I was fortunate that my husband did the grocery shopping, cooking, cleaning, etc.

I was fortunate that I had the funds to see a specialist doctor abroad (remotely) when waiting for my local POTS specialist doctor would’ve taken 18+ MONTHS.

I was fortunate that I worked in a small team, and I was able to have certain accommodations.

But there are a lot of people that are not as fortunate. 68% of POTS patients would work more hours if not for their symptoms.

Due to this condition, people's lives are being put on hold, paused.

I'm grateful to the staffers from @repmikequigley office and @durbincampaign office that I got to speak with today as they listened and asked questions as we shared our stories and asked for more POTS funding.

But you, too, can make a difference. Please reach out to your elected officials. Look for the link from DI in my highlighted stories on how to reach out.


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