Jordan Anderson - MASS Phenotype

Good morning! My name is Jordan Anderson, I am 25 years old, and I have a connective tissue disorder (I’m told M.A.S.S. Phenotype most likely Ehlers Danlos syndrome. It is like Marfans without a couple serious symptoms like retinal dysplasia and aortic dissection). I live in Greenfield, WI with my husband and large Newfoundland named Salty. I work at MCW doing clinical cancer research for patients with multiple myeloma and leukemia. I have attached a picture of my husband and me on our wedding day this past July! J I am very grateful to be a part of this ACHD community and I am so thankful to Dr. Earing for finally putting a name to my disease! When I was 14, my parents brought me into the doctor to get my back checked. I was referred to an orthopedic doctor who diagnosed me with severe kyphosis (normal thoracic spine curvature is approximately 25-35 degrees. My curvature was 75 degrees). Since I was still growing, my doctor decided to put me in a back brace which I wore for a horrible 2 years. Luckily, the back brace worked and my curvature has been at 45 degrees for the past 11 years. -7- It was until college that my next symptom surfaced. I was 19 when my primary care physician heard a slight murmur. She referred me to a cardiologist in the Green Bay area (where I am originally from), and he diagnosed me with mitral valve prolapse and a minor ebstein’s anomaly. I was put on observation. After that, I started having all of these other issues which were treated independently. I have attention deficit disorder, TMJ disorder, I have hypermobility in most of my joints, I have horrible circulation, palpitations, hypotension, muscle spasms (I currently get injections which are amazing at relieving pain!) and other nerve issues, skin sensitivity and other skin issues, fatigue, and the list goes on. When I moved to Milwaukee 4 years ago, I believe I saw a cardiologist and was later referred to Dr. Earing because they believed I had a congenital disorder. It was then that Dr. Earing put all the pieces together for me and diagnosed me with a connective tissue disorder. Most people feel bad for me when they find out I have this disorder, but I am glad that I do. Although it is a big pain to deal with most of the time, it has made me the strong and confident person that I am today. Most recently I have begun working out and really pushing myself physically. I was always told (and told myself) that I could not do any cardio because of my heart condition. In reality, I was holding myself back by saying I couldn’t do this. I’ve started jogging and rock climbing and love it! I do have to wear a heart monitor and blood pressure monitor, but I feel so accomplished! I’ve signed up for the color run, the dirty girl mud run, and the tough mudder this year and am so excited to get over this hurdle in life and push myself to the limits. I love to travel, hunt, fish, do archery, backpack and camp, dance, I volunteer with my dog doing therapy, shopping has always been a passion, and generally love living life to the fullest. Each day is a gift and life is too short to hold yourself back J Thanks! Jordan Anderson Clinical Research Coordinator Medical College of Wisconsin Cancer Center Clinical Trials Office