The Fight for Empathy: Living with Klippel-Feil Syndrome

I was born with Klippel-Feil Syndrome (KFS), which means I have a cervical fusion and other often related issues. My fusions are C1-skull, C2-C3, and C6 or 7 to T1 or 2—no one can quite decide. Beyond my spine, I've dealt with a cleft palate, imperforate anus, deviated septum, heart murmur, small mouth, small ear canals, cervical ribs, hearing loss and tinnitus, and facial asymmetry. Some people with KFS also have a single kidney or double/absent reproductive organs. On top of that, I have Chiari Malformation (where my brain is sliding out of the base of my skull), Degenerative Disc Disease (DDD), Scoliosis, and Sleep Apnea.

KFS and the genetic gamble

When I was having my kids 33 to 23 years ago, I was told my birth defects weren't genetic. We now know Klippel-Feil Syndrome (KFS) can be genetic, though it can also occur spontaneously. Knowing this has added another layer of concern when I think about my daughters' futures. I've stressed to my daughters that they need genetic testing before even thinking about pregnancy (and to stay somewhere they can get an abortion if needed!).

A lifetime of medical gaslighting

Honestly, I was so gaslit my entire life that I felt lost and alone. Sharing life with Klippel-Feil Syndrome online has helped me connect with others, but it’s also opened the door to unwanted attention and ignorance. Unfortunately, I've also had my share of people posting pictures they took of me without consent. It seems people with birth defects are still seen as fair game to taunt online. Not surprisingly, I struggle with depression.

Fear of a painful legacy

My daughters are now older than I was when I had them. It makes me sad to think I may never be a grandma, but it truly scares me to think of passing this painful curse on to them.