Survivor Stories & Information

Before even entering the 9th grade, I had already seen at least 5 different specialists who all seemed to come to the same conclusion; I was fine. No one could figure out what was wrong with me, the plethora of odd symptoms, the disorientation and dizziness, and the constant chest …

My story starts from being a child really, I was always very active, I danced, did gymnastics, fell, walked, went on long bike rides, and what not. I always complained it really hurt me and it took at least two full days of rest for me to recover after a …

Hi, I’m Hannah. I’m 13 and I was diagnosed with hyper mobile EDS the summer before I started middle school. It was really scary at first. How can I keep up with classes? How can I have a social life with a serious disease like this? It’s still scary but …

My name is Samantha and I’m currently 20 years old. I first started having joint problems in 2003. It started with my knees (both of them). Doctors weren’t to sure what was happening. I started physical therapy. My knee problems continued. The problems soon went to my feet and ankles. …

My journey was a long, hard road attempting to find out what was TRULY wrong with me. For the first 22 years of my life, all of the family members and adults in my life looked at me like I had lost it when I would complain about the pain …

I was 27 years old when I finally was able to connect the dots with my diagnosis of Ehlers Danlos Syndrome (EDS). EDS is a mutation in the gene for connective tissue, and can affect the body in numerous ways. Although there are six types, the three are most common …

I woke up one morning when I was 18 and could NOT walk. I was rushed to the hospital where they diagnosed me with spondylolisthesis, and said I was born with it. When I was 31, I ended up in a wheel chair when my vertebrae collapsed side by side …

Dear World, My name is Maddison Parker, I am 9 years old, and I have Ehlers-Danlos Syndrome. I want the world to understand Ehlers-Danlos Syndrome, so am sending this email out. I have some questions for you all! I would like to know why no-one cares about Ehlers-Danlos Syndrome? May was Ehlers-Danlos …

In January of 2010  I was diagnosed with Ehlers Danlos Syndrome after a discouraging and difficult 10 year journey to finally NAME all my strange symptoms. Since then I’ve been trying to find balance; I am a middle school special education teacher, a wife, a mother, a Christian, a friend, …