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.
While other organizations are currently working toward funding medical research and physician education for POTS, there is currently no expectation that POTS symptoms will be alleviated any time soon. In fact, recent indications suggest that some cases of POTS are caused by autoimmune disorders, which are notoriously difficult to treat. This suggests that POTS patients will be required to live with this disorder for the foreseeable future. No other foundation is currently working to improve quality of life of POTS patients, or to serve their day-to-day practical needs for living better. Standing Up to POTS has been created to address these needs. Specifically, we help provide POTS-specific solutions, resources, information and programs that help patients to live better by addressing their challenges.
Standing Up to POTS is proud to participate in research on postural orthostatic tachycardia syndrome (POTS) to help improve the quality of life of those suffering from this invisible illness. Standing Up to POTS launched its first major research project into the issues of functional disability in the POTS population compared with healthy controls in the spring of 2016 and has already published an article in Clinical Autonomic Research. Our second major research project is currently underway looking a factors underlying suicidal risk in POTS and other chronic invisible illnesses. Additionally, we are testing a new suicide screening tool that has been designed specifically for people with chronic illness.
Further, Standing Up to POTS is committed to educating healthcare practitioners about the realities of living with a chronic illness like POTS. By targeting publications and other materials about POTS toward physicians, physical therapists, and psychologists, we can increase general knowledge of the disorder in our healthcare professionals. We published our first paper in the May, 2016 issue of Counseling Today that discusses chronic illness, depression, and suicide risk. Check out a list of all Standing Up to POTS publications.
Finally, Standing Up to POTS is committed to helping to educate our own community about POTS and related illnesses like Ehlers-Danlos Syndrome and mast cell activation syndrome. These disorders often coexist and complicate the medical treatment of the individual. Arming families in the invisible illness community with good, practical advice is a priority of this organization.
We hope that you will stand with us by donating to Standing Up to POTS. This is a 501(c)(3) charitable foundation that is run by the dedication of our volunteers. All donations will go to funding our research initiatives or educating the medical and general public about POTS. We are proud of our initiatives that have been launched recently to benefit the POTS community. Our IRS Employer Identification Number is 47-4805498. For those making donations greater than $250, a receipt will be emailed as an assurance of your contribution when you take your donation as a charitable deductions on your taxes. If you shop on Amazon, please find us on Amazon Smile. Part of your purchase price will be donated to Standing Up to POTS.
Top Ten Reasons to Donate to Standing Up to POTS
- Your contribution is tax deductible
- Our staff is 100% volunteer
- We have reached people in 82 countries, just in 2016
- We publish research papers about POTS
- We present our findings and raise awareness at conferences
- We actively support families living with POTS
- We publish awareness articles about POTS
- We have created an informative website with more than 40 pages
- We have a research fund for clinicians interested in studying POTS
- We are actively working to improve the quality of life for people with POTS now