TSC Talks! No Holds Barred~Advocate Extraordinaire! Daniel Price~TSC, Rare Disease, Adoption & LGBTQ Advocate TSC Talks!

“You are here for a purpose. There is not a duplicate of you in the whole wide world; there never has been, there never will be. You were brought here now to fill a certain need. Take time to consider what it might be.” Lou Austin.

This happens to be one of Daniel Price’s favorite quotes and as you will see and hear, has truly framed the way Daniel lives his life. Daniel Price, a rare disease and adoption advocate, and young adult from the Seattle Washington area who is living with TSC. He’s Auxiliary Adult Regional Coordinator West and has been an active volunteer for the last 3+ years. Working in the airline/travel industry part-time, has given Daniel the opportunity and scheduling flexibility to travel the country and to parts of the globe to participate in TSC conferences and other events such as; Step Forward to Cure TSC walks in Seattle as well as Northern and Southern California; Sound Bites in Minnesota; Regional Conferences in Houston, San Diego, Saint Louis and Los Angeles; and the 2018 TSC World Conference in Dallas. Recently he attended the TS Alliance Board Meeting in Chicago and the 2019 March on Capitol Hill in Washington, DC. He’s flown to Melbourne, Australia to help them with their first Comedy for a Cure.

Daniel was adopted from mainland China at the age of 3 and diagnosed with TSC at the age of 6 when visiting a dermatologist to examine the red bumps on his face. He is the only family member with a rare genetic disease and states, “I've had seizures as a younger child. Development delay issues in K through 12 education and had a special education program. I've gone through a speech and language program, was kicked out and then put back in later in my K to 12 programs and have had many other challenges through trying to maintain in work, living and other daily challenges as well facing life “

Daniel’s mother sought the best treatments for Daniel as she could at the time but the TS Alliance was just being formed and there was not as much information available about TSC as there is currently. Eventually, Daniel found the TS Alliance, stating, “I reached out to- I think the headquarters in DC and they mailed me out to a couple of people in the Washington area. And they email-connected me to someone named Gloria, and I was like, Oh, okay. And then she's said that we're going to have a picnic coming up in Seattle. So, then I go to this picnic and meet other people (with TSC & families), and it changed my life. It changed the way I saw it. So yeah. I've learned a lot from Gloria and the other people that within the TSC community within the Pacific Northwest”

Seeking better medical care, Daniel traveled to the TS Clinic in Cincinnati and was excited to be able to visit all TSC related specialists in one location and talk to medical professionals with specific expertise in treating TSC. He carries a book on TSC with him to every appointment and hospital visit to share with any and all of the treating team to not only make sure they have a quick reference guide on TSC at their fingertips but also raise awareness of the condition and educate as many people as possible.

Outlining ongoing challenges Daniel states, “I mainly struggle with TAND, (stands for) tuberous sclerosis complex neuropsychological disorder. I struggle a lot with depression, anxiety, mood swings, socializing with other people. And many people just don’t see it They see a regular person going to work, paying their bills, driving, going to school, but they don't see the outcome of what TAND or TSC. They don't see the real picture. They don't see the big picture of what TAND can do. I do get mood swings. There are times where I just want to like shut people off and shut off from the world when it's just too much sometimes”

We discuss his return to China, with his entire family, and was able to meet caregivers and other members of the local community who remembered Daniel and what...