Nov 16, 2021
On this week's show we are speaking once again with Kristine Hoestermann, the founder of "FindYourRare" and she will be explaining how difficult it has been to get a diagnosis for Ehlers Danlos Syndrome and where that diagnosis took her (Brittle Cornea Syndrome & the BRCA Gene for Breast Cancer are the latest two)
Allow me to introduce myself🦓My name is Kristine (kk). I am the CEO of RARE.™ A brand that was born from my own frustrations following the onset of my symptoms in 2016. It never occurred to me I could wake up sick and never get better. That I would lose everything I knew without noticing.
In the beginning of getting sick I experienced extreme isolation. I felt like I didn’t fit in anywhere. Among symptoms that have yet to have to be attributed to a known disease🧬I have been diagnosed with EDS , POTS, and Autoimmune Small Fiber Neuropathy Secondary to Unknown Connective Tissue Disease 🆗 That feels like a lot right? but I didn’t look sick and that made it really hard for not only me to accept but also the world around me 🌍
I created RARE.™ as a safe space for myself until I realized so many other rare disease fighters, chronic illness, chronic pain, invisible disease or any human needed that same thing. So I got to work and here we are. Together we can start to bridge the gap 🚧
🆗More about the RARE. Girl behind the brand;
🥄I am a fierce lover of Grey’s Anatomy. Meredith Grey is my person.
🥄You can be sure that I’ll be either listening to Taylor Swift or True Crime.
🥄My favorite book is a Thesaurus
🥄I am a loyal Ticondaroga Pencil user
🥄I love to create & I am a huge nerd
🥄My Wardrobe can easily be mistaken for your grandmas & I love it
Change Starts Here. Connect With RARE.™
📱Share With Us 🔛@findyour rare on all social platforms #findyourrare
🛍 Shop your purpose 🔛 www.findyourrare.com
🎙 Because We Are Strong Podcast 🔛 www.bwspod.com
🗳 VPR Membership Club 🔛 findyourrare.info/vrp
✉️ Reach Out 🔛 firstname.lastname@example.org