S17 Ep15: Complex Illness

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) During our discussion I mentioned how I picture complex diagnoses as being like an over-spooled fishing reel, you don't know where to start to unravel the different aspects of the condition, but you know it's all connected! ​ ​ ​Heeeeere's Kristine! 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 🔛 [email protected]