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Managing FOP pain requires a variety of tools and techniques. In 2023, the IFOPA hosted the pain management series to explore medications, pain psychology approaches, physical therapy techniques and aromatherapy (a form of complementary or integrative medicine) as tools to decrease pain. At the end, the FOP community heard from an FOP pain researcher who shared what FOP pain research has taught us and how we can apply that research to our day-to-day life. Acccess Recordings and Resources from the Pain Management Series:
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Meet Our Speakers |
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Medications for Pain |
Dr. Xiaobing Yu After Anesthesiology Residency with academic excellency at Brigham and Women's Hospital-Harvard Medical School, Dr. Yu completed Pain Medicine fellowship at University of California San Francisco prior to his faculty appointment. At UCSF, in addition to providing innovative evidence-based pain management, he is also active in medical education and clinical research to understand the mechanism of the induction and maintenance of neuropathic pain, and explore new therapeutic targets |
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Pain Psychology
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Dr. Edin Randall Dr. Randall completed her pre-doctoral residency in pediatric psychology at Rush University Medical Center (RUMC). At RUMC, she developed a strong interest in working at the intersection of psychology and medicine. Aiming to specialize in pediatric (health) psychology, she then completed a post-doctoral psychology fellowship with the Psychiatry Consultation Service (PCS) at Boston Children’s Hospital (BCH). It was during that fellowship with the PCS that she became interested, more specifically, in understanding and treating pediatric chronic pain. She feels fortunate to now have the opportunity to work as a clinician and researcher on the interdisciplinary team at BCH’s Mayo Family Pediatric Pain Rehabilitation Center. |
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Aromatherapy as an Integrated Approach |
Elena Pomana, Holistic Coach Elena considers herself a true explorer who was reborn when she discovered essential oils from doTERRA. After extensive research and experiences, she realized that you cannot heal an illness without healing the soul. The pivotal moment that led her to study NMG (German New Medicine), books and documentaries, was when she realized that the main conflict in FOP ties to the feeling of self-devaluation. She decided to seek not only the answers but also the right questions where she found that every illness or crisis is an invitation to inner growth. She became certified as a Master Holistic Therapist and decided to understand her emotions, as well as change her thinking and perspective with the help of coaching through wisdom. |
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Physical Therapy Techniques for Pain |
Dr. Julie Shuman, PT, PhD, DPT, PCS Dr. Shulman is the supervisor of physical and occupational therapy at the Mayo Family Pediatric Pain Rehabilitation Center at Boston Children’s Hospital in Waltham. Dr. Shulman’s research aims to bridge gaps critical gaps between the bench and bedside by expanding use of clinically meaningful measures of disability in youth with chronic pain, including exercise testing, quantitative sensory testing, and standardized measures of motor performance. In addition to skiing as many days as she can each year, Dr. Shulman enjoys teaching and mentoring rehabilitation clinicians in evaluation and management of pediatric pain disorders. |
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Pain Research in FOP |
Dr. Jaymin Upadhyay, PhD Jaymin is a translational medicine scientist with a focus on understanding pathological processes and symptoms (e.g., pain and depression) in diseases impacting the musculoskeletal system. He has also implemented imaging techniques such as non-contrast MRI and 18F-NaF PET/CT to characterize skeletal disease activity or treatment effect. Much of his work has involved musculoskeletal conditions affecting large populations (juvenile idiopathic arthritis) and he's led several projects that investigate (ultra-) rare conditions such as fibrodysplasia ossificans progressiva (FOP), fibrous dysplasia/McCune Albright Syndrome and complex regional pain syndrome, amongst others. |
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Questions?
Contact Hope Newport at [email protected] or (785)294-1607.
