My Life With A Connective Tissue Disorder: A Bit About Me

I am Katie and I am a 17 year old suffering from what is thus far an undiagnosed Connective Tissue Disorder, most likely to be Marfan Syndrome.  

For those who are unfamiliar with Connective Tissue Disorders here are some basics:

Connective tissue is basically the glue of the body. It keeps many of your internal organs in place, and protects them from tearing, it also helps keep your joints from dislocating etc. It helps with scarring and many external things as well. When you have a Connective Tissue Disorder (CTD) or disease then your connective tissue is "faulty" and is not doing it's job properly. There are many different forms of CTDs from genetic disorders such as Marfan syndrome and Ehlers Danlos syndrome to others like sclerodoma with no known cause. Some are Autoimmune CTDs such as Systemic lupus erythematosus and Rheumatoid Arthritis.

Now that I've defined the basics here is a bit about me. I am a generally optimistic and loving person. I like to make others happy, doing so makes me happy. I love to draw, though I don't wish for a career in doing so. I also like to read and write. I have an amazing mom, who has been by my side every step of the way throughout this entire journey. Without her I would not be half of the person I am. I love music and would love to learn how to play the piano (better). I am always trying to grow and learn as a person. I am easily inspired and have found so many amazing people within the online communities I've joined. People who remain strong and kind and willing to help make other's lives better despite having themselves suffered more than anyone should have to. These people remind me to be thankful for my life and what I've been given, and to do everything in my power to live my life to the fullest. I sincerely thank them for that.

Personals aside; through this blog I will detail my life-long journey with this disorder. So far this has included but is not limited to; 7 surgeries, many trips to the hospital, severe chronic pain, and most recently a heart defect. I have found that the resources put out there by others living like myself prove to be invaluable and so I thought I would add.