ANNUAL HEALTH CARE ISSUE

FEELING ALONE WITH YOUR UNDIAGNOSED SYMPTOMS?

BY ELLEN LENOX SMITH

Too many of us have had times living life knowing that something is just not normal with our bodies. To make this even worse, many of us get lost and ignored when the medical world doesn't help us solve the issue. Does that sound like something you have had to face, too? You have a choice to let them win or to pick up the pieces of your mystery condition and try to find an answer, which was what I had to do.

I was born with a condition called Ehlers-Danlos Syndrome and all I ever knew was my normal of living in this body. But as time progressed and strange things kept happening, despite trying to live a healthy happy life, I was turned away over and over, and told I "looked fine and all was normal" and given no explanation.

Was it normal to be on the parallel bars in high school and ask which way should I put my elbows, due to them rotating almost 360 degrees? Was it normal to find myself reacting to one healthy food after another with stomach aches, exhaustion, headaches and irritated bowels? Was it normal as life progressed to get thinner and thinner despite trying to eat healthy, and then have my bowels totally shut down caused by a motility issue? And what about becoming a master swimmer and developing excruciating pain in the shoulders and neck, to eventually hav

ing to have both shoulders repaired along with two neck fusions? How many experience bones subluxation and dislocating from receiving a loving, simple hug? After a bladder prolapse repair, was it normal that it prolapse again one year later? Clearly something had to be wrong and this second prolapse became my final straw, realizing this was not a normal body I was expected to live in. I needed help and began an endless search to create the team to help me find answers.

It was thanks to needing a second bladder repair that I met a smart caring doctor who sat me down, asked question after question and said to me: "I think you have EDS and want you to go to a geneticist before I will do the repair." After being turned away from finding the answer for fifty-four years, I thought this was a magical day, hearing this doctor's words to me. But upon going home and looking up this condition and thinking I was

FACING FACTS: After you allow yourself time to mourn your losses caused by your medical issues, you need to create your medical and social network to help you improve the quality of your life.