莎拉见面.
出生时被诊断为北大, 莎拉 spent much of her childhood 和 young adult life keeping up with a strict diet 和 formulas to manage her condition. Now, she enjoys cooking with her husb和, spending time with her pets 和 advancing her career.
Q: Tell us a little bit about you 和 your family.
我今年42岁，住在北大. I have seen a lot of change in medical treatment over my life! I have been successful due to my extremely supportive family. I live with my husb和 和 our three pets, but have a close extended family 和 enjoy spending time with my nieces 和 nephew. I also have a brother 和 cousin with 北大, which made growing up with the 北大 diet more fun, because I had family who shared my experiences.
“The most important thing I want people to know is – ‘Although 北大 may be a challenge, 这不是一种限制!’”
Q: What is the one thing you want others to know about living with 北大?
The most important thing I want people to know is – ‘Although 北大 may be a challenge, 这不是一种限制!事实上, I often encourage people to remember that the disciplines we learn while managing treatment leads to developing traits necessary for success.
Q: How do you like to stay involved in the 北大 or rare disease communities?
It has varied throughout my life, but I love local 和 national 北大 conferences. They are such a great way to connect. I also stay connected through social media 和 have built relationships with people living with 北大 from around the world. Some of the most interesting messages I get are from places like the Middle East, where treatment isn’t as advanced yet.
问:是什么让你成为“稀有的”莎拉??
I like to say that everyone has a completely unique story! 很明显, living with 北大 has given me a story that is different from many of my peers, but my specific combination of life experiences is also different than anyone else in the 北大 community. We all have something valuable to share – it’s just a matter of digging into your story.
Q: Name someone who is an inspiration in your life 和 tell us why.
我的母亲. Growing up, I never realized how much work she had to do to raise two healthy kids with 北大. As I got older, I began to appreciate what went into our medical care. I wouldn’t be where I am today if she wasn’t so dedicated to making sure I managed my 北大 well.
Q: What is your favorite book 和 why?
I read the Bible more than any other book, so that one is my favorite. But I read A LOT – I have a book collection with 100s of books. 我推荐的书有 圣灵抓住你 和 你跌倒了 安妮·法迪曼， 角落里 by David Simon 和 Edward Burns, 和 Scarcity: Why Having Too Little Means So Much by Eldar Shafir 和 Sendhil Mullainathan.
Q: What’s the best piece of advice you’ve ever been given?
专业, by far the best piece of advice I have ever received was to never turn down an opportunity to speak publicly. It has been the piece of advice that has most helped me to advance my career.
Q: Tell us one goal you look forward to working toward accomplishing in the next few years.
I am close to completing a degree at the University of Chicago – I only have my thesis left to write! I also launched a br和 recently called Prosperous 北大 that I look forward to growing over the next few years. 我谈论和教授多样性, 真正的领导, 和 wellness through the lens of own journey with 北大.
