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Richard Hite has ridden 400 miles of his 600 mile ride down the California coast. What if he left his bike pump or spare tire at home? Or left without a map for his route? Without Support and Gear (SAG), his ride would be destined for failure from the start.
Patients diagnosed with multiple myeloma go without SAG on a regular basis. Most of us had never heard of multiple myeloma when we received our diagnosis. So how do we ask intelligent questions in the clinic when we don't even know what questions to ask?
While there are many myeloma resources (like www.myelomacrowd.org), websites or patient meetings that provide great info, the information is usually presented in scattered way. You might pick up a concept in one place, but forget how to find it later. We wanted to create a new way for patients to to get educated about myeloma from the ground up. We created HealthTree University as the first and most comprehensive "university" on myeloma with over 60 myeloma specialists as our "faculty." We've gathered over 350 lessons from these experts on everything from the definition of an m-protein to myeloma genetics and maintenance therapy.
We snuck it into HealthTree (www.healthtree.org) without fanfare and have released two courses so far that you can complete. Following the lessons are simple quizzes that will test your knowledge on this disease. We will be releasing a new course each week on every topic imaginable on myeloma.
We created HealthTree University in part because doctors have such limited time with us in the clinic. Our time is better spent if they help us address our current personal situation or side effects instead of answering basic myeloma questions like "What are light chains?" With HealthTree University, you can learn in the convenience of your own home, or in the waiting room of the clinic on your computer or tablet. Then make a list of your personally relevant list of questions and take them into your appointment.
Having the right support and gear in myeloma means getting the right education when you need it. Now you have the tools to be prepared, because knowledgeable myeloma patients ask better questions and get better care.
Special thanks to our Bike the Coast sponsors:
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of HealthTree Foundation (formerly Myeloma Crowd).