Who I Am, and What It Is.
Most of you probably don’t know who I am or know very little about me. My name is Hayley, I am a college freshman and go to SUNY Oswego, a school along Lake Ontario in New York. I am a Broadcasting and Mass Communication Major originally from Buffalo New York and I was diagnosed with Ehlers-Danlos Syndrome at the age of three.
Most of you don’t know what Ehlers-Danlos Syndrome is and that is ok, it is a genetic disorder that involves connective tissue and only about 1 in 2,500 to 1 in 5,000 people see the effects of the disease. If you are still confused don’t worry, I’ll break it down a little further.
Ehlers-Danlos Syndrome (EDS) is a rare connective tissue disorder that effects ligaments, joints, skin, and many other aspects of the body involving connective tissue. This also means I have less collagen, which acts like the glue that holds you together.
EDS is a heterogeneous group of heritable connective tissue disorders which basically means that it runs in the family and its dominant, so one or more of your children can get it if only one parent has it. Not only that but EDS has six different types. Personally my struggle is with Hyper-mobility type (type 3) but that doesn’t mean that I don’t have symptoms of other types, I just exhibit more hyper-mobility more than anything else.
Despite having something like this I have had a relatively normal childhood. I went to school, did extra curricular activities, and even marching band. I work at an elementary school with some of the best students and staff and continue to live a pretty active lifestyle, I just have a little bit of differences. I adapted what I did to my disability.
For most activities it isn’t a set back, its a challenge. I work around it to still do what I love. I hope to share my stories and to give a look into the life of not only a college student’s life but also a look into the life of someone with chronic illness.
Adjusting to life as a college student can be rough, but adjusting to living on your own with a chronic illness can get down right over whelming. I hope my thoughts and tricks to getting by can help someone out as well.
Obviously this is just a dip into what this disorder really is. If you are eager beavers you can check out the Ehlers-Danlos Foundation website at http://www.ednf.org/