To: Kim Leimberger, Employee Relations Specialist
Education for Rare Diseases in Oregon
We are petitioning for the Providence Medical Group to begin awareness and education programs for Postural Orthostatic Tachycardia Syndrome for their physicians, patients, and the community. We are petitioning for these programs to actively include current POTS patients and contain information from actively treating specialists from across the US.
Why is this important?
Providence Health Services, one of the largest hospital groups in the Portland Metro area of Oregon, is under equipped and undereducated about the diagnosis, treatment, and full range of symptoms involved in POTS (Postural Orthostatic Tachycardia Syndrome).
POTS is a disorder of the Autonomic Nervous System (ANS), primarily characterized by the symptom that it takes its name from: when you stand up, you can pass out. When people stand up, gravity starts to take over with your body's blood flow, pulling it down to your legs and abdomen. In most people, the ANS triggers a slight increase in blood pressure and heart rate, tightening the veins in your legs, and compensates to keep blood flowing normally to your brain. In people with POTS, things don't quite go as planned. The ANS overcompensates, increasing the heart rate dramatically. The veins in the legs don't tighten, and blood pressure doesn't raise, and can often drop. Blood flow to the brain is slowed, they get less oxygen to the brain, and they can gray out or even pass out completely. Other common symptoms in people with POTS include nausea, gastrointestinal disorders, heat intolerance, fatigue and more. POTS is currently affecting an estimated 1.7% of the population, though with the high number of misdiagnoses that most POTS patients receive before their POTS diagnosis, that percentage could be much higher. POTS is debilitating, ruining peoples' careers, family lives, social activities. It is also misunderstood, frequently misdiagnosed or mistaken for stress, anxiety, depression, sometimes even bipolar disorder or other more serious psychological disorders. As an in-home caregiver for a patient with POTS, I've seen many issues with Providence Health Services regarding the education of their providers. Most have never heard of POTS, and find it "too complex to treat." Some don't believe in POTS, since there is nothing structurally wrong with the body. Others know a little about it, but are either going by out-of-date research information, or don't know how to diagnose/treat it. There are a handful of doctors in the Portland area who are being overwhelmed with patients from all over Oregon and Washington.
Providence Health Systems needs to start educating their providers about how to diagnose POTS, and how to treat it. I am petitioning them to start an education and awareness campaign within their hospitals and clinics, and invite local POTS patients to speak first-hand about their experiences.