Advocating for Rare Diseases

Welcome  to Difficult Conversations with Dr. Anthony Orsini. Today, we are going to have a conversation about sickle cell  and rare diseases with someone whom I believe is uniquely qualified to have this discussion. My special guest today is Dr. Marjorie Dejoie-Brewer, owner of M.A.D.F.I.T MD, a medical consultant, wellness, and health business. She is also a Medical Consultant for the Sickle Cell Disease Association of America, and more recently held the position of Patient Engagement Lead in rare disease sickle cell for Pfizer.  Dr. Dejoie-Brewer is a patient herself with Sickle Cell Disease, and a firm proponent and practitioner of comprehensive and preventative health and wellness planning. Dr. Dejoie-Brewer has combined her expertise as a physician, her work in multiple sector settings, her passion for wellness, and her experience as a sickle cell patient to address the inequalities of sickle cell patients so that they live healthier lives without distrust of medical providers.  As always, Dr. Orsini keeps his promise about two things, that you will feel inspired, and you will have learned valuable lessons to be a better and more compassionate communicator.Marjorie tells us  about her personal journey as an immigrant's daughter to medical school.  She talks about changing career paths when she found out she had Sickle Cell Disease and the support network she had participating in a program called “Bridging the Gaps” which gave her a viewpoint of what medicine could be in real time. She also tells us what attracted her to starting a wellness clinic and focus on rehabbing individuals. Marjorie shares with us her view of chronic and rare diseases and how it is a redefinition of what optimal is every time you get sick.  Marjorie explains how that delivery of information from the doctor is so vital, and how these conversations definitely need more compassion. Dr. Orsini shares how in his workshops he talks about imagine, plan, and adapt when going into that conversation. We learn more about  issues with lower socioeconomic teenagers and minorities with Sickle Cell crisis  and how they are often viewed as drug seekers. She shares advice on what she tells patients and  providers in a crisis situation.   We end with Marjorie telling us the most difficult conversation she’s had in her life and how she navigated through that conversation. If you enjoyed this podcast, please hit follow, and download all the previous episodes to find out more about what we do and how we teach communication. Host: Dr. Anthony OrsiniGuest:Dr. Marjorie Dejoie-BrewerSponsor:The Finley ProjectFor More Information:The Orsini WayThe Orsini Way-FacebookThe Orsini Way-LinkedinThe Orsini Way-InstagramThe Orsini Way-TwitterIt’s All In The Delivery: Improving Healthcare Starting With A Single Conversation by Dr. Anthony OrsiniResources Mentioned:Dr. Marjorie Dejoie Brewer LinkedinDr. Marjorie Dejoie-Brewer InstagramSickle Cell Disease Association of [email protected]