Bullous Pemphigoid with argenx

We have fabulous guests this episode sharing their expertise about a skin condition called Bullous Pemphigoid: patient advocate Dr. Naomi Bishop and argenx’s Associate Director of Global Patient Advocacy Shelley Gerson.
Naomi Bishop, M.D. (she/her) is a physician-medical writer/editor with a rich background in the arts. Following a career in dance and graphic design, she pivoted to medicine, where she channeled her fascination with human physiology and commitment to helping others achieve optimal health. With a young family in tow, Dr. Bishop completed the required preparatory courses and attended medical school, where she graduated as valedictorian of her class. She completed her post-graduate training at New York-Presbyterian Hospital, Columbia-Cornell, and has cared for children in Pediatric Intensive Care Units (PICUs) in several top New York hospitals. Her passion for understanding systems failures led her to seek formal training in Quality Improvement and she served as director of PICU Quality and Performance Improvement for six years. She was recognized by the Solutions for Patient Safety group for her poster summarizing the impact of adding Human Factors Engineering principles to central line-associated bloodstream infection (CLABSI) prevention strategies. After witnessing the tragic death of an infant with Alveolar Capillary Dysplasia, Dr. Bishop was awarded a large CDC grant for her project designed to increase awareness of this rare, fatal lung disease. Her research produced what is still the most cited State of the Art Review on the subject. In November 2019, Dr. Bishop pivoted to a career in freelance medical writing and editing, disciplines that combine her insatiable appetite for perusing the medical literature with a dedication to improving communication between healthcare providers, their peers, and the public. Dr. Bishop remains deeply committed to patient-centered, empathic, and ethical care. As a proponent of Design Thinking and Human-Centered Healthcare Design, she strives to leverage her insights and experience to create content that is compelling and instructive.
In November 2021, Dr. Bishop was diagnosed with Bullous Pemphigoid, an event that rocked her world and changed her understanding of what it means to be a patient with a rare, chronic disease. Her search for the latest treatments led her to the IPPF, an organization to which she owes boundless gratitude for supporting her journey through treatment and recovery. As of April 2023, her BP is in remission.
Dr. Bishop currently shares an empty nest in New York City with her five sun-loving plants. She is a voracious reader and fitness enthusiast and savors her close relationships with her adult son and daughter. She would insist that the Atlantic, New Yorker, New England Journal of Medicine, and a beeline to the IPPF be within reach if she found herself stranded on a desert island.
Our second guest is Shelley Gerson. Shelley is the Associate Director of Global Patient Advocacy at argenx. Shelley leads the advocacy efforts for alternative treatments for people living with autoimmune dermatological and hematological diseases. Previously, she worked as a patient advocate at Sanofi and Biogen. Prior to working in the biotech industry, Shelley was a licensed counselor and a private practice therapist. Shelley lives with a severe form of Hemophilia, called Hemophilia A, so she also has a personal perspective of being a patient advocate herself.
During the episode both Dr. Bishop and Shelley recommended the International Pemphigus and Pemphigoid Foundation and the Facebook group, Bullous Pemphigoid Warriors.
Stay tuned for the next new episode of It Happened To Me! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.
It Happened To Me is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.
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[@Robescocia]

I am a 77 year old Scotsman and I started to get itchy blisters about 3 months ago in April 2024. After 3 months of getting no where on my own I finally made an appointment to see my doctor/GP on 4 July 2024 ! He said he suspected Bullous Pemphigoid and he took a swab and sent it to the laboratory for analysis so I hope to get a firm diagnosis soon. In the meantime I am researching to see what I kind find out about BP. Your podcast has been excellent and I identified with everything Dr Naomi said. At this early stage of my own journey I felt she gave me hope and an insight into medications that might be involved and organisations that might be useful IPPS( International P& Pemphigoid Support group) plus BP Warriors on Facebook. Many thanks again!

[@rosiesalinas9375]

I’m 60 and just got diagnosed with bp and yes I went through this also the itchiness was insane

[@pinkandspice1691]

My mother just have BP at 85 years old