Ashley’s Journey with EDS

This is Ashley’s story about her struggles with Ehlers Danlos Syndrome. She has been evaluating her situation.

Written by Ashley99300, published 6 days ago.

“When I was a toddler, I had multiple blood tests, yet doctors couldn’t seem to figure out what was wrong with me because my blood tests turned out normal. My parents took me to the doctors because, I seemed to bruise super easily, and my skin would split open easily. Later on I was diagnosed with Ehlers Danlos Syndrome. I’ve tried talking to people about this syndrome but nobody seems to understand me. I feel alone.

Currently I’ve gotten stitches around 15 different times, it hard to even remember how many times I’ve been to the hospital for stitches cause I’ve gone so much. I have bruises all on my knees that have never healed for years. My chins are covered in scars, yet nobody seems to understand why I’m so insecure. I would post pictures but I don’t want the world to see me.

Everyday is hard, I wake up wishing I could be like every other girl. If I didn’t have the scars and bruises, I would be the type of girl to wear shorts and skirts and dresses to school, but I’m to embarrassed, and scared to let people see the real me. Last year, I was tripped in my class and ever sense then, my elbows have been messed up, there’s extra skin, and one has a permanent (as for now) purple color. So I also don’t wear short sleeved shirts or anything. I bring a jacket everywhere I go, even in the summer. I’ve tried looking up treatments for my elbows and scars, but no creams seem to work. I recently found a surgery, but times are hard and its expensive for things to be done with my condition. Some days, now I’m not gonna lie, I cry myself asleep thinking about how I look like compared to everyone else, I pray to god to cure me, and say I will do anything if he does. I also do cheer leading, I’m one of the top on my team. I have increased flexibility. When I fly(the girl in the air) I get bruises when the girls catch me, and it hurts really bad. Recently when I was doing a twist in the air my elbow hit the girl who was catching me and it split open. Also when I was on someone’s shoulders, I was popped off wrong and screwed up my ankle, it will never be the same, it still hurts sometimes and it still looks bigger due to how my joints are made. When I worked on back handsprings I’d constantly hurt my arms cause of my joints. People say maybe I should stop cheer, but there’s nothing else I’d rather do, and because of Ehlers Danlos I’m not going to let anything stop me from doing something I love. At competitions, do you know how hard it is for me to go in front of all those people and let them see my scars and bruises?

At homecoming do you know how hard it is to be seen by everyone at school? In the summer do you know how hard it is to wear shorts and short sleeved shirts in public, even if I don’t know anyone? No you don’t. I believe I’m the only one out there with this many scars and bruises on my legs. Sometimes I ask myself, what did I do to deserve this syndrome, is there a reason god gave us Ehlers Danlos syndrome, maybe he thinks were strong, and we are, but inside we all(well some) tend to break down sometimes. I wish they could find a cure, or something, anything. I’m scared to drive when I’m older, and scared to have children. because I get hurt so easily, if I get in a crash will I die instantly, and if I have kids will I die due to my circumstances.

I wonder if anyone will ever except me, and think I’m beautiful even with all my flaws. I feel like I’m thought as weak, or the girl when people look at her think, I’m glad I’m not her. I know it seems like I’m not grateful for what I do have in life, but I really am. I’m happy none of my family seems to have Ehlers Danlos Syndrome, but I wonder how did I get it if no one in my family seems to. This is my first story, and please don’t leave hate comments. If I think of more, I’ll probably write another story about my life with Ehlers Danlos Syndrome.”

Many of us wonder why we have EDS?  Yes it is a genetic disorder but it does not affect everyone in the family?

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