BENEFITING: Standing Up To Pots Inc
ORGANIZER: Standing Up To Pots Inc
Standing Up To Pots Inc wrote -
Standing Up to POTS, a 501(c)(3) charity, was founded in 2014 by a college professor who was witnessing her daughter’s childhood being stolen by postural orthostatic tachycardia syndrome (POTS). After a bout with mononucleosis at age 10, her daughter started down a slippery slope into extreme fatigue, hot flashes, abdominal pain, neuropathic leg pain, brain fog, and sensitivity to touch. She went from a healthy, vivacious, outgoing child to one living in a state of chronic illness virtually overnight. They finally received a diagnosis after seeing nine specialists, but adequate treatment has been elusive. They are not alone. It is estimated that 1% of teens develop POTS and we know that many people develop it as adults.
Standing Up to POTS was founded to provide other families with practical advice, access to the latest medical journal articles on POTS, and support groups for patients and their families dealing with this chronic, invisible illness. There is a great need in this community for the services that Standing Up to POTs provides.
Standing Up to POTS is growing, and wants to fund research on postural orthostatic tachycardia syndrome (POTS) that has the potential to improve the quality of life for patients right now. We are particularly interested in research to find more effective treatments for POTS patients by partnering with physicians interested in conducting POTS research. We will focus on grants that address these questions: 1. What medications work best for people with POTS? Do they do best with IVIG? Low dose naltrexone? Beta blockers? Others? 2. How can we better diagnose underlying or comorbid disorders to get effective treatment to these patients? Does the patient also have Sjorgen's or Addison's disease that have viable treatment options? Other disorders that are treatable to increase their quality of life?
To date, Standing Up to POTS is making a real difference in the POTS community around the world. We have visitors on our website from more than 80 countries as we deliver information about POTS to families who need it (www.StandingUptoPOTS.org). We run two Facebook support groups: one for adults and family members, and the second only for teens dealing with POTS. Standing Up to POTS launched a large online research initiative on quality of life issues for people suffering from POTS cluster disorders last spring, and had over 1,000 people with POTS participate. We have already submitted two manuscripts to scientific journals from that research project. Our first professional paper was published in the May, 2016 issue of Counseling Today and we have another paper that has been accepted by the journal Health & Social Work.