Consumer Involvement Banner
Ms. Nikki Seefeldt

Photos and text used with permission of
Ms. Nikki Seefeldt.

Nikki Seefeldt is a life-long advocate in the fight against Tuberous Sclerosis Complex (TSC). She grew up with a “relatively mild” case of TSC, experiencing seizures as a baby, which she says were controlled and arrested early. About 10 years ago, she was diagnosed with lymphangioleiomyomatosis (LAM), a rare lung disease that can occur in individuals with TSC. Treatment has brought some relief and stabilization of the LAM symptoms, but a tendency to contract bronchitis easily means she must be vigilant about staying ahead of infections. In spite of this, she enjoys an active, productive life. Employed full-time in healthcare (mainly in medical websites or health plans for most of her career) Nikki’s leisure time overflows with an abundance of creative pursuits: improvisational comedy and her local arts scene, an abiding love of reading, film, and music, computer games, and social media, helping her keep in touch with far-flung family, friends, and fellow volunteers. She has dedicated countless hours doing volunteer work for both the TS Alliance, having served for a time as a member of their board of directors, and The LAM Foundation. She learned about CDMRP’s Tuberous Sclerosis Complex Research Program (TSCRP) while working in the government relations arm of the TS Alliance reaching out to congressional members and staffers. In 2011, she served as a TSCRP consumer peer reviewer for the first time.

As a consumer reviewer, Nikki draws not only on her life experience as a person with TSC, but also from her rich volunteer and advocacy history. She says it is “an exciting time: we are learning so much and continue to... I think doctors struggle sometimes with more severe cases as well, how to improve quality of life for those with intractable seizures or advanced disease… how to help those caregivers who have loved ones who are severely affected and may be nonverbal, because it's not just the medical struggles. There are so many other social factors and things that come into play with daily life in dealing with this disease, even for those of us who seem ‘fine’ or have ‘mild’ cases. Like any chronic illness, living with TSC can be extremely frustrating and draining on everyone at times.”

These days, Nikki’s advocacy work is done behind-the-scenes, notably, as a participant in peer review for the TSCRP and other programs similarly modeled. She says that seeing the results of projects funded by the TSCRP is “thrilling,” and describes the program as “so vital in so many ways and a beautiful public partnership between the government and the people.”