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

I‘m Katie, a 17 year old suffering from what is thus far an unspecified Connective Tissue Disorder, most likely to be Marfan Syndrome or Ehlers-Danlos. 

When you have a Connective Tissue Disorder (CTD) or then your connective tissue (the glue of the body) is “faulty” and is not doing it’s job properly. There are many different forms of CTDs and still a world of knowledge to be gained for those researching, treating and living with them.

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 andhave 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. :)

Me '06

2 thoughts on “My Life With A Connective Tissue Disorder: A Bit About Me

  1. Excellent job Katie. I have Marfan syndrome. I was diagnosed at 17, had surgery in 2000 for aortic aneurysm. Keep up the good work. It all helps make people aware of this often unknown syndrome.


    • Thank you Dominic! I hope your surgery in 2000 went well and I’m really glad you like the blog. I’ve found it so helpful to read through the stories of others with MFS and similar disorders. Your support is appreciated!


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