INvisible Project – Emily Lemiska | Klippel-Feil Syndrome
Like any fourteen-year-old preparing for high school, Emily Lemiska felt self-conscious about her appearance. She wasn’t worried about her weight, hair or skin. Emily was self-conscious about her abnormally short neck. She asked her parents to make an appointment with her pediatrician to take a look. Emily, her parents and her doctor alike were shocked when an X-ray showed she had Klippel-Feil syndrome (KFS).
Tags: 1/40000, advocacy for invisible illness, awaiting diagnosis, cervical fusion, cervical spine damage, cervical spine pain, chronic invisible illness, chronic pain, chronic pain warrior, congenital, diagnosing rare disease, difficult diagnosis, ehlers-danlos syndrome, fighter, fusion of vertebrae from birth, genetic, genetic disorders, invisible, INvisible Project, KFS, klippel feil, klippel feil awareness, klippel-feil syndrome, misdiagnosis, neck spasm, neck trauma, one in forty thousand, progressive disease, rare, rare congenital birth defect, Rare Disease, Rare Disease Awareness, rare genetic disorder, Rare is Everywhere, severe chronic pain, severe pain, severe whiplash injury, shoulder spasms, spine defect, spine deformity, spine disorder, warrior, whiplash
About Jessi Finds Out FibroHi, and thank you for finding your way to my corner of the web! I'm on a journey to empower myself and hopefully others through shared courage and compassion. I write Finding Out Fibro, a chronic illness and chronic pain awareness blog that is not just about fibromyalgia, as well as a new project making jewelry under the Etsy name Hopeful Spoon. Please check out the shop and share if you can! Thank you for your support! My other hobbies include defeating ableism anywhere I find it, upcycling old junk into funky awesomeness, raising my voice to erase stigma against invisible illness and mental illness, baking, collecting vintage kitchen ware, sharing body-positive messages, playing around in photoshop, abstract painting (especially in neons and metallics!), advocating for those living with chronic illnesses and mental health challenges, seeking safety and upholding visibility for LGBTQIA individuals living with physical and mental disabilities, researching and testing plant-based remedies for chronic pain, and spending all my spare spoons in my veggie garden. This is my opportunity to do more than just survive with chronic illness. This is me learning how to live well, even though there is no cure for the war my body is waging on me.
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