Are you living with POTS?  Tell us YOUR STORY!

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Join us for the 3rd Annual Standing Up to POTS 5K Walk/Run in Springfield, OH on September 24

Read our First Published Paper on Chronic Illness and Suicide Risk

Do you need help to deal with the issues surrounding chronic illness?  Our Counseling and Suicide Prevention pages may be helpful.


STANDING UP to POTS is committed to increasing public awareness for postural orthostatic tachycardia syndrome (POTS) and raising money to support POTS research and implement POTS-specific solutions, resources, information, and programs.  Standing Up to POTS was founded in 2014 and is a 501(c)(3) non-profit organization that is run 100% by volunteers.  All contributions to our organization are tax deductible.

Although postural orthostatic tachycardia syndrome (POTS) is not visible or typically life-threatening, it causes an enormous emotional, physical, and financial burden to POTS patients and their families.  The burden to POTS patients is made worse by the lack of understanding and awareness by most people, combined with some of the unique features of POTS, such as inability to be upright, frequent fainting episodes, adrenaline rushes, severe brain fog, pain, and the unpredictable flares of these symptoms.  The high degree of physical disability, cognitive impairment, pain, and disruption to schooling/career/life plans leaves these patients with myriad challenges to everyday living.  They often struggle with finances, relationships, daily chores, grooming, maintaining proper nutrition and weight, communicating their needs to family and friends, finding supportive social circles, finding social activities that work for them, and maintaining good mental health.

Our Vision: Empowering people with POTS to live their best lives.

Our Mission Statement: Standing Up to POTS will investigate quality of life issues, implement research-based initiatives to improve quality of life for people with POTS, and accelerate public awareness.  

My daughter was diagnosed with POTS when she was 10 years old, and we felt very much alone in that diagnosis.  We created Standing Up to POTS to generate a community of people who can support each other while pushing forward understanding of POTS.  Before I ever had children, I earned a Ph.D. in Physiology and Neurobiology from Rutgers.  I look forward to combining my roles in science with my passion about POTS to try to facilitate a difference in the POTS community. 

At Standing Up to POTS, we are inspired by the courage of all who stand in the face of this invisible illness, and hope that your family will join forces with ours to make a real difference in the lives of those suffering from POTS. Please click the Contact Us button at the bottom of the page and tell us your story, or join us on Facebook! 

Trapped

By Lily Pederson, age 12
Raging, out of control
Crack, pop, sizzle
Lit ablaze I am. 
 
Shadows dance across the floor
Your grip never lets me go
I am caught, ensnared in your trap. 
 
Let me go, let me go
I toss and I turn
Writhing and squirming. 
 
I wake up
I am alone
Trapped behind the metal bars of sickness.

Living with POTS: A Daily Struggle

facts

factsA Few Facts about Postural Orthostatic Tachycardia Syndrome

    • Approximately 500,000 to 1,000,000 Americans suffer from POTS.

    • 1% of US teens likely have POTS, and it is 5x more common in girls than boys.

    • People of all ages can develop POTS, but that it is most common in women ages 12-35.

    • Current research indicates that POTS may be an autoimmune condition.

    • The severity of symptoms varies, but 25% of POTS patients can’t physically attend work or school. Many researchers compare the physical effects of POTS to having congestive heart failure or chronic obstructive pulmonary disorder (COPD).

We can't sit by and watch our loved ones suffer any more.

We are STANDING UP TO POTS, and hope that you will stand up with us. There are many other families out there that are feeling what we are. Desperate for answers. Crying in pain. Dealing with school districts. Searching frantically for help from the medical community. Isolated by illness. We need to join together in one voice to demand more and better care for our loved ones!