My eds story

My life story starts the same as anyone else. When I was a little kid I was sick all of the time and I was in and out of doctor offices and hospitals all of the time. My family even now says that they can't remember when there was a time when I was not sick or did not have a injury. When I was young I started to have trouble with pain in all of my joints. But no one understood why. I had test after test done and nothing ever showed up. Doctors told my parents that these were just the normal pains of growning up but my parents did not take that as the problem. Not only were my mom and dad very worried because I was getting so sleepy all of the time, they told the doctors that I had trouble feeding when I was very small. But as I grew up it became more troublesome; not only was I having pain all of the time but now my joints were dislocating. I was very active when I was at this age and of course when I went to the doctors for the injuries they would say it was just a normal sport injury because so many people in sports dislocate joints. They would say the pain is just part of it and that it would go away in 2 or 3 days. But days and even weeks went by and I was still in so much pain. I would be back at the doctors "being so hard headed" but they would just brush it off. We were told that if we were so worried about me getting hurt just to wear support braces under my clothes when I did any type of sport. But my mom being a mother knew that something was not right. Over the next few years I was having more trouble with more of my joints so I stopped the hard hitting sports like volleyball and basketball; I even stopped dance classes because I was getting hurt so much. Things started to look up for a few months but then it happened: my hips began to pop out when I would try to get up off the floor or out of chairs. Then my knees started to go and I would fall over because my knee caps would move and my knees would give out from under me. But I was to afraid to tell my parents or doctors so I just kept quiet. In high school I joined the bowling team and I was having so much fun; but then my shoulders started to pop out and dislocated all of the time. Still I never said anything because if the fear of no one believing me or understanding me. But my parents knew I was in pain and that I was not telling them because I would go to bed with icepacks on my arms, shoulders and knees all the time. One day when I was bowling my arm dislocated so badly that I was told I would need surgery to fix it; however, when I was born I had a heart problem, so I had to get the "ok" from my heart doctor to have the surgery. Well when I went for my pre-surgery check-up my heart doctor said that I could not have it because there was still a problem with my heart.So at the age of 15 I had a heart cath' then 1 month later I had open heart surgery to fix something that was wrong with my heart. Well about 1 week in the hospital then I got to go home and I spent my sweet 16 getting better after heart surgery. Two months later, I started have pain in my shoulders and neck and no one knew why. So there I was, back in the doctor's office and when the doctors saw me I was rushed next door to the hospital for testing. They did blood work and a spinal tap (that is a big needle put into your back - not fun!!!). That showed nothing so I had a heart echo done and that showed a lot of fluid around my heart so the doctors had to drain it. After a few days in the hospital I went home I felt so much better after that. Well, a year passed and I had my shoulder surgery. That got fixed and I had no problems with it so I got to go back to school and I was like, "Ok, I am normal again." I went back to my old life of playing sports and hanging out with friends. One day I wanted to try out for the football team and one of my teachers was the coach. I asked him if I could and he said, "Sure." Well, it was almost the end of the day and I was talking to my friend when someone tripped me and my knee dislocated. So my friend helped me up and helped me walk to the clinic and I had to call mom to come and get me.We called my doctor when we got home and he told us to go right to the ER. We got to the ER and waited and waited. The doctor came in and said that my knee was dislocated and that they would have to pop it back into place. Well, the nurses came in and put in an IV and gave me some pain meds and something to knock me out. I woke but my leg was hurting so bad the doctors told me that I shouldn't be in pain because my knee was back into place. I told them I was in pain, and they were like, "Well the pain must be in your head!"Well my knee just kept popping out and so I had to have surgery on it too (when I was 17). That was the most painful thing I have ever had done to me. I hated myself for needing it done, but it did not do the job - I still have trouble problems with my knee. And, Christmas break and I fell down the back steps and I hurt my same knee so mom took me back to the ER and they popped it back into place. One of the nice doctors who knew me very well came in and talked with us. He asked if my knee was still popping out and we said, "Yes, along with other joints now." He told us that he would be right back. When he returned he had a medical book in his hand and he read us something he found in the book. He told us it sounded like what I may have. It was called EHLERS-DANLOS SYNDROME (EDS). My mom and I just looked at him I said, "What is it?" He said this syndrome can make you have many dislocated joints and a lot of pain. He told us he wanted me tested for it. So I went to one more doctor and they did some blood work and a bone scan done and guess what?I have EHLERS DANLOS SYNDROME. It took doctors over 18 years to find out what was wrong with me. Just to be sure, my mom and I went to USF and we saw a new doctor who took one look at me and said, "There is no way that you don't have EDS." So he did blood work and all of these other tests. That was over 6 years ago and I am not normal and I never will be but I can only take life one day at a time and that is the only way you can live life. I still live in pain all the time and I still have my joints that dislocate but as long as I have good friends that understand and my family, I know my life will be ok. The thing that needs to change is the awareness of EHLERS DANLOS SYNDROME. Because if you go to some doctors and you tell them what is wrong with you they will not treat you because they know so little about it and because they want clear-cut easy to treat patients. Well, some are like that and others are not. Please help share the word that EDS (EHLERS-DANLOS SYNDROME) is real and there are people out there who have it!"