My Journey being Rare
My name is Christina, and I'm 29 years old. I’ve been using Instagram for about 7 years to share my experience with chronic illness, disability and spreading awareness for rare diseases. I feel it's extremely important for those with disabilities to find their voice in the world, and to know that their disability is only one part of them. That there is so much more to someone than just their physical being. I found my voice through art, makeup and writing.
When I was 10, I was diagnosed with a very rare bone tumor disease called Fibrous Dysplasia. I have it in my left hip, femur and knee. FD turns regular bone tissue into fibrous tissue, causing tumors/lesions to grow inside the bones. This causes fractures, breaks, leg length discrepancy, deformity, etc. There is no cure for Fibrous Dysplasia, and no known FDA approved treatments. I’ve had 10 major operations on my leg, including 2 rods and 2 plates. I currently don't have any hardware in my leg due to senstivity to hardware, leaving my leg susceptible to fractures and breaks. I fractured my knee standing in the kitchen a few years ago, and use an off-loader brace to keep my fracture from getting worse (it pushes my weight to the right side of my knee, to take weight off of the left side, which is where my fracture is). For now, we are just keeping an eye on everything, as my spine has been the priority recently.
When I was diagnosed with Fibrous Dysplasia, I was also diagnosed with scoliosis. I had 2 spinal fusion surgeries in high school, at the ages of 15 and 16, to correct my curve. A few years ago, I was diagnosed with a bilateral pars defect (bilateral fracture) in my L5-S1 joint, which is the very last vertebrae in your spine. Last year in June, I had my 3rd spinal fusion surgery to correct the bilateral fracture. I recently found out that I fractured a screw in my newest fusion after I stared experiencing more pain and a popping/crunching sensation in my spine. I also found out that my fusion did not heal at all, and I am apart of the 1% of spinal fusions that fail. I’m currently going through my 2nd spinal cord stimulator trial, and next week will find out if I need another more aggressive surgery. I suffer from chronic pain everyday, and rely on very strong pain meds.
I also suffer emotionally, but I try to remain positive by expressing myself through art and makeup. If I had never become disabled, I would have never found out that I'm an artist. I suffer from depression. anxiety and an eating disorder due to the emotional toll that this has taken on me. I'm not afraid to admit that I take anti-depressants and anxiety medications- I'd rather be here and be on anti-depressants than not be here at all. Makeup is my favorite thing in the entire world, and it's the one thing that I do for myself everyday. I believe that everyone who has a disability deserves to feel desired and attractive. We are more than our disabilities. I always say that I'm a rare babe with rare bones, because people with disabilites ARE babes, and deserve to feel beautiful, no matter what that looks like to them.