Patient advocates and PWN panel Q & A session: Santino Santino Matrundola, Dan Jeffries and JD Faccinetti answer questions from the floor about living with acromegaly, advocacy, memoir writing and more.
The Canadian National Acromegaly patient support group recently presented it’s first annual conference in which physicians, specialist and patients exchanged knowledge, insight and dialogue. We (PWN) were delighted to have had the opportunity to participate, learn, meet wonderful dedicated people, make a presentation on the importance of awareness and action, and talk about the things we can all do to help reduce the time takes to diagnose people with pituitary disease. All the sessions were excellent, extremely informative, engaging and filled with useful information you can share with your circle. We encourage you to view the presentations listed below. You can also access the videos by linking to the Canadian National Acromegaly website here.
Presenters list:
J D Faccinetti, Chairman and CEO Pituitary World News presents his patient journey and discusses awareness and action.
Santino Matrundola: An engaging, moving journey with acromegaly.
Dan Jeffries: Author, patient of not just one but two rare diseases offers an entertaining, funny look at his journey.
Michelle Johnson, M.D. – Dr. Johnson, an endocrinologist, discussed the ins and outs of deciding the appropriate treatment for a patient.
Angel Rigueras, M.D. – Dr. Rigueras presented a fascinating look at pain, pain management and coping techniques.
Dan Holmes, M.D. BSc – Medical Biochemist discussed lab tests protocols for IGF-1 and GH blood work.
Ryojo Akagami, M.D. BSc MHSc FRcSC Neurosurgeon discussed acromegaly surgery techniques, post operative issues and patient QOL surveys.
Andrew Thamboo, M.D. and Warren Mullins, M.D. offered a fascinating look at pituitary surgery from the Rhinological standpoint
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