03/01/2025
‼️LONG POST‼️
Today is Rare Disease Day! As many of you know, back in December 2021, I had a complete bowel transplant. The reason for this was because of a VERY rare genetic mutation called ACTG2. ACTG2 is an incredibly rare mutation where your body lacks the protein to produce muscle contraction in your small/large intestine and bladder. This mutation is INCREDIBLY hard to diagnose, and with it being a rare mutation, it’s not talked about enough; therefore, it’s considered “crazy talk.” This mutation/disease is not curable. Even with transplant, this mutation still affects my day-to-day life.
I wish I could say that was it; however, my luck is never that good. Shortly after transplant, I was diagnosed with yet another rare condition called CTCL (cutaneous T-cell lymphoma), a blood cancer that attacks your organs with your skin being its first victim. This disease is also not curable.
Without COTA and the support from my COMMUNITY, my mom wouldn’t have been able to sit bedside with me and fight for the care/treatment I needed and deserved. Having said all that, there is so much chaos and ugliness happening in the world right now. EVERYONE is entitled to their opinion, but no one should expect to have the same point of view. The world cannot just be black and white. It’s not that simple. Our healthcare system cannot be black and white, there has to be a bigger picture. While I could elaborate on a more specific topic, my hope is for everyone to pause and consider the potential consequences. If we take away funding from our healthcare/insurance companies not only are we taking away routine doctor appointments but we are taking away life saving treatments and medications. CHEMO, radiation therapy, anti rejection medication which is something I take everyday of my life to keep the gift my donor gave me. My COMMUNITY has consistently supported me throughout my journey, and I hope they will continue to do so by understanding these HUMAN BEINGS didn’t ask to be this sick or ask to be put on this much medication. Something my mom always told me growing up that’s everyone needs to hear “treat people the way YOU want to feel.”
