by Ed Coghlan
“Patients with chronic illness often can learn more from other patients than they do from their doctors.”
Dr. Susan Nyanzi should know.
This Ugandan-born British-educated chronic disease management specialist has lived the life of a patient long before she turned to trying to help.
She was diagnosed with Scleroderma when she was 7, developed fibromyalgia from an auto accident and suffers from Celiac disease.
She has also developed a unique two and a half day conference called “The Patient to Patient Experience Symposium” to be held November 18th-20th at the Terranea Resort in Palos Verdes, California.
“We believe that people with chronic conditions can lead a more satisfying life by being more self-determinant,” she said.
Dr. Nyanzi pointed out that genetics influences about 20% of the condition and 80% is lifestyle related.
She believes the Symposium, which hopes to empower and educate those living with chronic conditions, has particular value for the chronic pain patient.
“I know from personal experience that pain shouldn’t be defining you as an individual,” she said. “We can learn how to use other means of reducing pain and improving the quality of life.”
The Symposium will focus on a wide range of topics including
- improving quality of life
- how to advocate with local and state governments
- estate planning
- starting an at home business
Health care providers will also be invited so “they can learn how to help patients manage their chronic conditions.”
Patients and providers will be recruited from both national Scleroderma Non-profit organizations, other autoimmune related foundations, professional organizations and the committee’s contact lists. Email blasts, personal invitation and social media will additionally be used. They are targeting 200 – 300 attendees with at least two-thirds or more of those being providers.
“While we wait on a cure, let’s focus on those currently living and show them how they can better manage their condition. To help create such an environment, partnerships across disciplines (medicine, public health, integrative management, advocacy), at the local and national level are key to sustainable networks.
In case you’re wondering–and we were–the cost to the participant is $150 which includes 2 night stay and meals, a huge discount to the patient, a great value for such a venue.
Here’s a story the National Pain Report did on Dr. Nyanzi when she was preparing to speak at the 9th annual Women in Pain Conference in Los Angeles in September.
If you’re interested in attending the conference, click here.