Communication + Research + Coaching = Patient Empowerment
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If you hear hoofbeats, it could be a zebra.
The medical community uses the term "zebra" as a universal reference to a rare disease. Physicians learn the core tenet of diagnosis--to assume that the simplest explanation is usually the best solution, so it is generally more productive to look for common, rather than exotic and rare causes for diseases.
Palominos to Zebras.*
By 2005, Suzi was living with digestive issues that had a strong grip on her health; she hadn't felt well for seven or so years. Physicians fired many a shot across her bow with broad diagnoses such as irritable bowel syndrome and menopause which they said were probably upsetting "her apple cart". After an ambulance ride to the ER for stomach issues and pain in her shoulders (you're right, they weren't related and the triage team totally missed these cardiac symptoms), she cajoled her primary care physician (PCP) to order all scans and bloodwork in the annals of medical literature to unearth what was causing her symptoms.
An astute radiologist was of the opinion that the CT scan had showed a spot on her bowel which was "worrisome" for carcinoid. In radiology lingo, worrisome is interchangeable with "we're going to need more tests". More tests confirmed she did indeed have a type of neuroendocrine (NET) cancer called carcinoid, and she was promptly turned down for surgery. Rolling luggage in tow, she travelled the east coast to find surgical treatment and was turned down by a total of five physicians; then, on her fifth stop she landed in New Orleans at one of the top clinics in the United States for treating these types of diseases, although this was unknown to her at the time.
After recovering from a long and arduous surgery, she wondered why there was no dedicated NET treatment center with a multidiscipinary team in the Philadelphia area (her home town).It made no sense since Philadelphia was well-known for its medical schools and hospitals. It took about two years as a squeaky wheel and knocking down ivy-encrusted doors, but University of Penn- sylvania's Abramson Cancer Center launched a cutting edge neuroendocrine tumor program with a multidisciplinary team which now treats hundreds of patients a month; Suzi still acts as patient liaison and refers many patients there.
Sucess was addictive; many other community projects were to follow: the creation of a support/resource group; "Run for The Stripes" (a fundraiser at the Philadelphia Zoo); Penn's first NET conference sponsored by the Caring for Carcinoid Foundation; speaking at Penn's doctors' conference for CME credits; working with the Carcinoid Cancer Foundation (CCF) to create its first ever annual report with Monica Warner before her untimely death; established an online medical and awareness jewelry store which donated part of its sales to the CCF. And, Suzi created the first ever NET patient handbook distributed by a medical practice or hospital clinic called I Have What?
* Suzi had a champion palomino show horse; as a patient with neuroendocrine cancer (carcinoid variety) she is part of a "zebra" community. The box at the top of this page explains the reference.
2011 Patient Advocate of The Year, Abramson Cancer Center.
From left to right. Dr. David Metz, Suzi Garber, and Dr. Dang, CEO of Abramson Cancer Center, Penn Health
She is now also a patient liaison and marketing and fund-raising volunteer for a clinical practice (NOLA NETs) at Ochsner Medical Center and has spoken before an audience of Ochsner hospital employees (NOLA) about her experience as a surgical patient. Dr. Eugene Woltering, head of the NOLA NET CLINIC which is at Oschner, is also medical advisor to the Patients' Project.
Suzi's advocacy all took place while dealing with her carcinoid cancer, endometrial cancer, a heart attack, a failed triple by-pass, two pulmonary diseases, diabetes and various and sundry peripheal health issues - a knee replacement and a broken ankle cobbled together with lots of metal. Suzi feels these obstacles led the way to her desire to become a patient advocate.
Although insanely busy and challenged with the new edition of Zebra Talk, the Patients' Project is planning to launch an online news journal this year and a series of literacy seminars.
Click here for a link to our Community Outreach page for a listing of projects and partnerships.
When The Patients' Project (TPP) launched Zebra Talk, it hadn't the slightest idea as to what was to follow. At the last count there were over 10,000 copies in circulation including those downloaded from the web. The distribution market for the handbook was clinics, hospitals, support groups, literacy groups, private practices, and physician associations. The handbook's target was patients and their primary care physicians.