Brooke Caron and her mom, Kathy, are veteran volunteers of the Turner Syndrome Foundation! They’ve been successful in raising awareness of TS, even getting Turner Syndrome Awareness Month declared in their home state of Maine. Now they’re getting creative with their awareness efforts with a new podcast, The Butterfly Pod!

I am Brooke Caron, and I was diagnosed with Turner Syndrome at 10 years old. Even before finding out, my family have been my biggest supporters. Growing up, my parents always had my best interest in mind. When I began showing developmental delays in my height in elementary school,  it was only natural for my mom to do whatever she could to figure out what was wrong. Since our home state of Maine is fairly undereducated about Turner Syndrome, my diagnosis brought about a long journey. My mom and I fought to find proper care and receive answers as new health concerns like Hypothyroid and Celiac developed, and old ones like continuous ear infections became connected to Turner Syndrome. 

Taking Action

It became abundantly clear very quickly, even to an elementary age child, that something had to be done to make people, especially doctors and teachers, more aware of this chromosomal disorder. My mom and I both wanted to do something to make sure fewer families had to live in the same doubt and uncertainty we did as I was growing up. Although we wanted to raise awareness, my mom and I hardly felt equipped to do so the first year or two following my diagnosis. We hardly knew enough about the condition to properly advocate for it, so my mom decided to do the next best thing. We didn’t have the knowledge to do anything on our own, but my mom decided to find someone who did.

My mom found the Turner Syndrome Foundation. After talking with TSF and attending a Team TSF event in New Jersey, my mom felt inspired to get Turner Syndrome Awareness Month declared in our state. Well, we accomplished just that and February is now officially TS Awareness Month in Maine! Not long after, I decided I wanted to do more to bring awareness to TS. While focusing on high school and college, I looked for more opportunities to get involved. I interviewed with a local health blogger, Diane Atwood, and worked with the Turner Syndrome Foundation to conduct phone interviews with women who also have Turner Syndrome.

Creating the Butterfly Pod

Around my third year of college, my mom and I slowly began to grow very interested in podcasts. We eventually decided we wanted to host a podcast to bring more awareness to Turner Syndrome. Our goal is not to just give facts, but have some fun as well. There are no shortage of topics to talk about, and a number of people we hope to interview. We decided to call it “Butterfly Pod,” after the butterfly symbol for TS.

It was tough to start, but we didn’t give up! I was still in school and working part time, and the recording equipment cost some money. My mom spent a lot of time studying other podcasts and gathering tips, but it was a struggle to get the episodes onto iTunes. About a month ago, we managed to finally get the episodes on iTunes! To date we have five episodes covering a variety of topics with a six coming towards the end of September. These episodes cover an introduction to our family, what Turner Syndrome is, my personal story, the story of a friend, Holly, who also has TS, and Celiac Disease, which I have.

Listen Now!

You can find the our podcast easily by searching “Butterfly Pod podcast” on iTunes! My mom and I can also be reached on Instagram: @Butterflypod_04 or Twitter: @Podbutterfly. Although it’s taken a lot of work, we truly enjoy raising awareness and hope to continue doing so!              

Join Brooke and Kathy in raising awareness today! Request your copy of the Awareness Toolkit to learn about the many ways you can get involved!