Road to Rare Disease Day: Chelsea’s Story

“Hello my name is Chelsea Lawrence and I am a chronic illness and disabled tiktoker! I build awareness for rare disorders. Empower people to get through those tough days. Help them learn how to weave through the difficult medical system. Finally I share my story along the way. Which has not been an easy journey as many medical zebras know. The road is paved sadly with medical gaslighting and misdiagnosing but I grew stronger and that’s why I wanted to help others! So they don’t have to walk the same path I did! I don’t remember the last time I was not in pain but at around age 11 is when is when it became noticeable. I thought it was normal. I thought you felt the pain I felt. I would do these weird things with my arms and knee caps. Also thinking it was normal. I thought pain was life and by the age of 23 I was told “ this is what aging feels like”. Even though I did have a diagnosis of degenerative disc disease and a spine surgery. After being horribly misdiagnosed by one of the best hospitals around. It took 9 months to find a complex care doctor and a six hour meeting to learn I had Ehlers-danlos Syndrome. Shortly after some extended testing that took months I found out I also had Mast cell activation syndrome, dysautonomia, Craniocervical instability. She told me on my first visit that if my doctors paid attention  I could’ve been diagnosed with EDS by the age of 15 easily. She said“ you have all the red flags in your medical history.” Since that visit I have gotten worse and become mostly bedridden and wheelchair bond  and my spine/ neck is in terrible shape and needing surgery this spring summer. Through all of this before I became disabled I was a model. I have stayed active in the community! I am proud to announce that I am now on the advisory board of Fashion Week Minnesota! I have worked with companies to help make sure designs are accessible like Target! I hope one day all clothing stores that carry accessible clothing! I can’t control what’s happening to my body but I can control my attitude. So I always make sure I fight with a smile and have faith on my side!”