Thank you Social Media for connecting me with other warriors who are living and thriving with Cowden Syndrome. I am pleased to introduce you to “C”
First I wanted to say thank you so much to Heather for being so passionate about making sure that awareness is spread about genetic rare syndromes and diseases and such. It is such an amazing thing that she is doing and helps so many people!
So hi! My name is “C” and I am a medical weirdo (my own term for myself) I have Cowden Syndrome, an AVM in my left forearm, and as an offshoot of my Cowden Syndrome I have recently started a journey with Thyroid Cancer, and I have Generalized Anxiety.
I was diagnosed with my AVM when I was in fourth grade after going to a friends birthday party, playing dodgeball with soccer balls which is never a good idea. I near the end of the game I was hit on my left forearm with a soccer ball, my left arm swole up and I ended up going to the ER that night. Needless to say none of the doctors I went to that first year had any idea what was going on with my arm, one thought it was a type of fracture that would’ve shown up in a couple days, another thought it was some overexertion of a swelling thing (I don’t exactly remember what it was called), and another one thought it was some cancer like thing. And it wasn’t. I eventually was diagnosed with an AVM and then a few years later after growing a thing in my foot I was finally diagnosed with Cowden Syndrome.
And as a result of all of this, I deal with Anxiety on a day to day basses, which I eventually got on meds to help me with.
A couple of months ago my doctors wanted to do a baseline scan of my thyroid because people with Cowden are at higher risk for Thyroid Cancer. Soo they did the scan and found two nodules on my Thyroid (one for each lobe/side). They did a Thyroid Biopsy (which ends up feeling like a huge bruise for a couple days afterword), and a couple days ago we got the results back. Turns out I have cancer, but it is undetermined how much cancer there is or what to do with it. A small part is definitely cancer, another part definitely not cancer, then the majority of it is something they can’t tell whether or not it is Cancer because of the fact that my P10 is the only thing they are picking up.
Sooo, now that I’ve told my story I wanted to just say that if you are one of the really cool people who have a genetic rarity you are not broken. Just because you are different from everyone else and can’t do some stuff that others can doesn’t mean that you are less than or unworthy of being a human being. And I know some of you probably wanted to punch me for the first sentence of this paragraph but you are really cool! You have this unique point of view that could maybe help someone else, and you have this way of thinking that helps you be empathetic to others who are struggling. So you really are a cool person!
If you would like to connect with “C” – her Instagram account can be found here. ❤