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.

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.

Diagnostic Journey:

• When Drew started showing symptoms and the beginning of their diagnostic odyssey.

Physical Characteristics and Diagnosis:

• Discussion on the subtle facial features of SMS and their presence in Drew.

Genetic Testing:

• The process and challenges of getting genetic testing for Drew.

Symptoms and Precautions:

• Managing decreased pain sensitivity and self-injurious behaviors in people with SMS.

• 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.

Advice and Resources:

• Advice for other parents or caregivers of individuals with SMS or similar conditions.

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. 

Stay tuned for the next new episode of DNA Today next Friday! New episodes are released every Friday. In the meantime, you can binge over 290 other episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Today”. Episodes since 2021 are also recorded with video which you can watch on our YouTube channel, this includes some episodes recorded at NBC Universal Stamford Studios. 

DNA Today is hosted and produced by Kira Dineen. Our social media lead is Corinne Merlino. Our video lead is Amanda Andreoli. Our Outreach Intern is Sanya Tinaikar. Our Social Media Intern is Kajal Patel. And our logo Graphic Designer Ashlyn Enokian.

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