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!
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@example.com