For many parents this is the hardest part of having a genetic disorder: the thought that you might pass it on to your children. For me I find that while this bothers me there is also a silver lining, I am going through it first. I am doing my best to help my children cope with the things that I have been through. Thankfully the medical community is slowly learning about EDS as a whole and while it can be hard to find a medical professional who knows anything about what we are going through it is not impossible. Twenty years ago when I first had problems I was completely written off as a patient. There was nothing wrong with me was what I was told. It has taken the EDS community a long time to get from that to having the few champions that we have today.
No comments:
Post a Comment