Amanda Lawrence, Chief of Patient Advocacy and Vice Chairwoman
Hello, I'm Amanda. I was born with hip dysplasia and lived my entire life thinking that was pretty much the only thing I had going for me. I went through a long journey of neglect with my hip dysplasia and also misunderstanding because of the lack of awareness and information that there was and still is to this day for hip dysplasia. I am in need of a hip replacement and doing my best to get strong to be able to do that without any subluxations during my recovery. Last year I found out I have POTS and Ehlers-Danlos syndrome and for now it is hypermobility type but I am hoping to try and rule out AEDS . I have two kids who also have Ehlers-Danlos syndrome due to their crazy amount of hypermobility and I have a wonderful husband who probably has a connective tissue disorder as well.
it's very easy to make friends it's not very easy to keep them especially when you are mentally and physically ill haha. I feel like there aren't enough people advocating for are health conditions and I joined because it is to me probably one of the most important things that someone who is ill can do. You have to live your life and you can't focus on your sickness, but at the same time, it is extremely important to raise awareness for it so that others do not suffer so badly never knowing what's wrong. I hope that you enjoy any articles that I write and the YouTube videos that I do make every now and then. Have a great day!
I didn't realize how common all of this was so I threw myself right into it last year which kind of messed me up a little bit mentally but I have bounced back and I've had plenty of time to get back to where I was mentally. I do suffer with anxiety depression and PTSD and I can have highs and lows but I usually try not to let that bother me and I do my best to enjoy life the best that I can with my kids and my husband. My kids keep me here and they are the biggest strength I'll ever have in my life. I love watching anime and playing video games with my kids and my husband, I'm a pretty big family-orientated person and I'm also an introvert so as much as I can be a social butterfly it takes a little bit for me to open up to people.