#293 Smith-Magenis Syndrome with Parent Scotti Taylor
In this episode, we explore the rare genetic disorder Smith-Magenis Syndrome (SMS) with our guest, Scotti Taylor. Scotti shares her personal journey and insights about her oldest daughter, Drew, who was diagnosed with SMS. Join us as we learn about the challenges and triumphs faced by individuals with SMS and their families.
Scotti Taylor (she/her) is a fine artist based in Oceanside, California, and a mother to four teenagers and young adults. She divides her time between painting and advocacy work. Her art reflects her experiences as a trauma and substance abuse survivor, her roles as a wife and mother, and her responsibilities as a devoted caregiver to her adult daughter with disabilities. Taylor’s work also explores the challenges of navigating physical and social barriers in contemporary society, aiming to evoke empathy and compassion. Her primary artistic themes focus on raising awareness for perimenopausal women and illuminating the rare genetic disorder Smith-Magenis Syndrome, with which her oldest daughter was diagnosed at the age of 20.
Discussion Topics:
Introduction to Drew:
Scotti shares about her daughter Drew, her personality, and what brings her joy.
Understanding Smith-Magenis Syndrome (SMS):
Explanation of what SMS is and how it affects individuals.
Daily challenges faced by Drew and her family due to SMS.
Diagnostic Journey:
When Drew started showing symptoms and the beginning of their diagnostic odyssey.
Early involvement of healthcare providers in Drew’s diagnosis.
Physical Characteristics and Diagnosis:
Discussion on the subtle facial features of SMS and their presence in Drew.
The pivotal moment involving a fellow parent in a Special Needs Moms online group.
Scotti’s initial reaction to learning about SMS through online research.
Genetic Testing:
The process and challenges of getting genetic testing for Drew.
The insurance approval process for the genetic test.
Explanation of the inheritance patterns of SMS and if Scotti and Drew’s father were tested.
Symptoms and Precautions:
Managing decreased pain sensitivity and self-injurious behaviors in people with SMS.
Extra precautions parents and caregivers need to take to keep those with SMS safe.
Impact of sleep disturbances on Drew and the family.
Other hallmark features of SMS and their effects on Drew.
Family Dynamics:
Impact of raising a child with SMS on family dynamics and relationships with Drew’s siblings.
Awareness and Advocacy:
Importance of spreading awareness about Smith-Magenis Syndrome.
Scotti’s art and its role in her advocacy and personal coping.
Advice and Resources:
Advice for other parents or caregivers of individuals with SMS or similar conditions.
Valuable resources and support networks for families affected by SMS.
Closing Thoughts:
Scotti’s hopes for others to gain an understanding and appreciation of SMS through her experiences and advocacy.
Check out Scotti’s art here and her Instagram (@heyscottitaylor). Be sure to also check out PRISMS that Scotti recommends during the interview.
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