POTS Research through Dysautonomia International
Donation protected
Think back to your last hangover. Or if you don’t drink, recall a time when you were sick. Remember the pounding headache, lack of energy, cranky mood, fuzzy head and a never-ending roller coaster of nausea. Imagine if you felt hungover every day, despite no alcohol - that’s the described reality of a person living with the medical condition Postural Orthostatic Tachycardia Syndrome (POTS), like my sister Jane. POTS is a form of dysautonomia; essentially, your central nervous system isn’t working right, and as a result, you feel “hungover” every day, without an off switch. Now remember that hungover feeling, but consider it takes an average of 5 YEARS and 11 MONTHS of appointments and tests for you to reach a diagnosis, and that you could be one of the 85% of people who feel their symptoms have been initially dismissed along the way. Scientists haven’t been able to pinpoint the exact cause, although they are getting close. The only available treatment tries to manage symptoms and build coping skills, but it is not a cure.
This is where we can gradually create change in the clinical picture for the 1-3 million people in US living with POTS. We can open the general conversation about chronic pain and expand our differential diagnoses, personally and professionally. We can acknowledge the suffering of others through compassion, listening and supporting. We can be less quick to judge someone for an illness you can’t see with your eyes. I am trying to create a little change by running in the Philadelphia Half Marathon in just 10 DAYS to: 1) honor my inspirational sister for the amazing person she is; 2) raise AWARENESS of this condition; and, 3) raise $ for scientific research being conducted for the POTS Research Fund by Dysautonomia International. This organization focuses not only on research, but also education and health advocacy. Please share this message or one of mine to follow over the next 10 days to promote awareness about POTS and Dysautonomia. Consider donating $$ on my GoFundMe page!
If you have any specific questions about POTS, Dysautonomia, how scientific research translates to treatment options, or whatever – please message me!
More information about Dysautonomia International, Inc.: Dysautonomia International is a 501(c)3 non-profit that advocates for millions of people living with disorders of the autonomic nervous system through research, physician education, public awareness, and patient empowerment programs.
This is where we can gradually create change in the clinical picture for the 1-3 million people in US living with POTS. We can open the general conversation about chronic pain and expand our differential diagnoses, personally and professionally. We can acknowledge the suffering of others through compassion, listening and supporting. We can be less quick to judge someone for an illness you can’t see with your eyes. I am trying to create a little change by running in the Philadelphia Half Marathon in just 10 DAYS to: 1) honor my inspirational sister for the amazing person she is; 2) raise AWARENESS of this condition; and, 3) raise $ for scientific research being conducted for the POTS Research Fund by Dysautonomia International. This organization focuses not only on research, but also education and health advocacy. Please share this message or one of mine to follow over the next 10 days to promote awareness about POTS and Dysautonomia. Consider donating $$ on my GoFundMe page!
If you have any specific questions about POTS, Dysautonomia, how scientific research translates to treatment options, or whatever – please message me!
More information about Dysautonomia International, Inc.: Dysautonomia International is a 501(c)3 non-profit that advocates for millions of people living with disorders of the autonomic nervous system through research, physician education, public awareness, and patient empowerment programs.
Organizer
Allison Donahue
Organizer
Philadelphia, PA
