Leesa's Profile

My story began in 2000 when I was 10 years old. I was diagnosed with a rare genetic condition called Marfan Syndrome and told I would eventually need heart surgery. Throughout my teens and early 20's, I had always assumed this surgery would not happen until later on in life, presumably my 40's or 50's. However, today, at the age of 26, I am only days away from surgery. Since diagnosed, my doctors and I have kept a close eye on my aorta. It had slowly grown, and the aortic root has now reached 5.2cm. Although I have had surgery before (spinal fusion at age 11) this is my first heart surgery so I am incredibly nervous. This nervousness is increased because I am in poor health, so I worry about making a full recovery. In addition to Marfan Syndrome, I suffer from neurocardiogenic syncope, near constant vertigo, hypothyroidism, several sleep disorders, dural ectasia, chronic migraines, and back/neck pain from herniated cervical discs. Mentally, I have severe anxiety and panic attacks; my anxiety is so bad that I am agoraphobic (I do not leave the house).