Ehler's Danlos Syndrome: A Family Affair, Part 2

Earlier this week we shared a post from our Fight Like A Warrior community member, Patty, who shared her niece's story living with EDS. Now, here is Natalie's perspective.

As a child, life should be full of excitement and fun. Unfortunately, living with a rare form of a not so common syndrome called Ehlers Danlos Syndrome (EDS) was a very rough road for me. I was constantly breaking bones, having surgeries and always needing blood transfusions.

Little cuts for someone without Ehlers Danlos Syndrome often ends with a simple cleaning, ointment and a bandage. For me, it ended up with stitches or staples. I thought this was normal. As I got older, I learned that this was only my normal and it was different than other’s normal. My 4 siblings struggled with me being different.

I was forced to wear a helmet and braces to protect myself in common falls I had due to my joints giving out on me at school. My blood pressure and sugar levels would drop for no reason and I'd black out during recess at school, and that landed me in a wheelchair.  

Due to the injuries I sustained and the ignorance of doctors regarding Ehlers Danlos syndrome, I was removed from my family at 2 years old under suspicion of abuse and neglect. That of course wasn't exactly the case. My foster mom took me to a genetics Doctor, and that's when they discovered I had EDS. I was returned to my family at age 3.

At age 16 I had 7 back surgeries due to scoliosis. That was a hard time in my life. The Dr's had a hard time keeping me healthy and struggled keeping me alive. As an adult I live a close to normal life. I eat healthy and keep my body from declining and causing my bones to grow weaker. I do normal household chores like the rest of the world. I have less broken bones as an adult than I did as a child.  

I'm also now on heart medications to stabilize my blood pressure. Sometimes I use braces to stabilize joints that slip out of place just from daily activities like getting out of bed or pulling the blanket over myself. As a baby I had hip dysplasia and surgery to correct my dislocated hip. Im probably due for another hip operation soon. 

I have 3 beautiful daughters ages 3, 13 and 14. The older 2 have HEDS and 3EDS. My 3-year-old has AEDS, which is the same form I have. We both also have another rare disease called osteogenesis imperfecta. My 3-year-old has yet to break any bones and hopefully doesn't for a very long time.

My daughter, Kade, has had 2 hip surgeries and 2 tenotomies. She's looking at having her first elbow surgery due to an injury she sustained from a fall trying to walk. Luckily for us, there's more known about the disorder then when I was a child back in the 80's.

I've been written up in textbooks due to the rarity of my illness, so when the Dr. tells me that I'm textbook, I just smile and tell him "I know."

Thankfully my daughter won't grow up being the only one with this rare form of EDS like I did. Her dad, sisters and older brother will be there to support her when I'm gone should the syndrome take my life due to organ failure from the lack of collagen my body doesn't make. So, until my day on this earth is done, I'm living my life to the fullest.

Thank you Patty and Natalie for sharing your story with us and the entire Fight Like A Warrior community! For more from them, find them on Instagram: @pattylea and @nataliemaypyles