Get it? Cowden(s)? Sorry, I just like to have fun with the name of this syndrome.
I am 21-years-old and I have been living with Cowdens for over 10 years now. I’ve seen my fair share of doctors and I’ve had my fair share of procedures. But that’s just all part of the syndrome. There’s nothing much I can do about it except making sure I stay nice and healthy for upcoming doctors visits!
I have a lump on my left arm near my elbow and one on my right leg near and around my calf. They are hemangomias and hamartomas. These bumps have been slowly growing since I was in elementary school. I cannot express how many times people have looked at the bump near my elbow with disgust, worry, and utter confusion and said “what the heck is that?!” I was very self conscious about it at first but as I got older my explanations for the bump just became more relaxed and confident in my answer. I suddenly became okay with having this rare syndrome.
When I was in middle school I had my thyroid completely removed. Doctors found multi-nodular goiters on my thyroid and one of them was beginning to calcify. A decision was made to remove my thyroid before it turned into thyroid cancer.
At the end of middle school I began having weird black outs where I couldn’t see or hear for minutes at a time. They only happened a few times but my parents took me to the doctors and after multiple procedures and MRI’s the doctors told my parents I had brain cancer. A few months went by and my parents were able to get me an appointment at Denver Children’s Hospital. We drove to Denver during my freshman year of high school and received the good news that I didn’t have brain cancer!
A few years ago I was diagnosed with hyperplasia in my uterus. My periods were so heavy that I was very anemic and was on the verge of needing a blood transfusion. I had an IUD put in to help regulate my periods and to prevent pre-cancerous cells that were found in my uterus. Fun fact, I’m okay!
Life in the Cowden(s) is hard but it’s just life. You can’t let it get you down. You just have to trudge through life one step at a time. I know it’s cliche but it’s true.
Until next time,