Andi thumbs up – Klippel-Feil Syndrome Alliance

Andi was not correctly diagnosed with Klippel-Feil Syndrome until adulthood. By then, she had numerous spinal deformities, chronic pain, secondary generalized dystonia and spinal myoclonus. Andi has had several surgeries and will be having Deep Brain Stimulation (DBS) very soon. She is a co-founder of the KFSA, and volunteers for the Spina Bifida Association. Her dream is to have a family of her own, and continue to fight for research and access to care for those with rare diseases and chronic pain.

Check out her Global Genes story here.