Expert Experience, Self-Advocacy, & Team Building
Dr. Bonnie Feldman, DDS, Founder and CEO of Autoimmune Connect, began practicing as a clinical dentist and later an analyst on Wall Street, when her son-in-law was diagnosed with an autoimmune disease and without realizing it, she became an autoimmune patient advocate.
“The first thing I needed to do was get organized, I had paper records all over the place, I didn’t really understand my medical history and then I needed to get educated: what is digital medicine or what is integrated and functional medicine? Integrative and functional medicine is all over the internet and it’s really easy to be sold snake oil, so I spent a very long time coming up a steep learning curve, trying to sort out what I call the hype from the hope. But once I understood what I wanted to accomplish I needed to fearlessly experiment and get assertive. I had to hire and fire a lot of doctors until I finally found a group that would support me in my journey.”
Patient Experience Panel
Several patients, active in advocacy, also shared their experiences. These included:
The panelists covered key topics including navigating how to create a treatment team, treatments that are safe and scientifically backed, and how to add treatments to your plan with your provider.
Tina Aswani Omprakash has Crohn’s disease, multiple autoimmune conditions, and numerous digestive diseases. This topic is important to her “because culturally speaking, there is a great push towards complementary and alternative therapies. I’m of Asian background and this is something that my family and extended family consider to be of great value, when it comes to helping to manage our conditions.” She discussed difficulties she had working with both eastern and western medicine and emphasizes the importance of knowing what is best for each person in their own journey.
Melissa Talwar was heading to the Olympics at 14 years old when she sustained a major concussion, being inconclusively diagnosed with multiple autoimmune diseases. She was finally diagnosed with fibromyalgia, and at 36 years old told to prepare for end-of-life care! She “used any bit of brain health I had left, I learned the term biohacking, which to me meant empowering myself to take my health back and became my own advocate. I studied, I learned about functional medicine principles and took Dr. Terry Walls and Dr. Bredesen, combined their philosophies together and it changed my life.” Melissa shares complementary medicine advice, including mental health and home gardening, which she hopes will become part of traditional care.
Indie Lee was diagnosed with RA in 2008 and began losing her vision, when she was diagnosed with a brain tumor and told she had 6 months left to live – fortunately she was able to have the tumor successfully removed. Unfortunately, she was diagnosed a year later with a second brain tumor but emphasizes the importance of “finding ways for us to take control of our health and create teams which can cross between conventional, functional, and digital health and really make that an integrative approach, where we’re leading the charge with a group of practitioners that are helping us.”
All three of these outspoken patients agree “There are additional modalities that can help you to obtain the best quality of life. There is no cure, but how can we use these different opportunities that are now coming forth, to help optimize our lifestyle,” can increase the options for betterment. However, they highly recommend avoiding anyone offering anything ‘too easy’ or anyone ‘over promising’, since there is no such thing as a magic pill or treatment.