Your Voice Matters: Taking Control of My Life with GVHD

(BPT) – Hello, my name is Amanda and I’m a 36-year-old mom who loves playing the piano and crafting.My son Isaac is my world, and while I am his biggest supporter while he plays Peewee football, he’s my biggest cheerleader as well. I live with graft-versus-host disease (GVHD) and some days are harder than others, but Isaac is by my side, inspiring me every step of the way.Rewinding to 2017, I was diagnosed with leukemia and underwent an allogeneic bone marrow transplant the following year. Although the transplant successfully treated my cancer, just a few months later, I was hit with a series of alarming symptoms.My abdomen swelled like I was nine months pregnant. My skin became incredibly dry and hypersensitive to sunlight. Even the mildest spices, like a dash of ketchup, caused my tongue to swell, making even the simplest meal a challenge.Tests revealed that I had developed GVHD, a common complication following an allogeneic bone marrow transplant, which occurs when donor cells (the graft) attack the recipient’s organs and tissues (the host). While some experience mild symptoms that can go away, mine were debilitating.I knew about GVHD before my transplant, but nothing prepared me for the reality.As someone who has always been an open and outgoing person and had blogged regularly about my cancer journey, GVHD left me feeling isolated. I didn’t know how to talk about what I was going through. And this was very unfamiliar to me.My experience with GVHD has been an absolute rollercoaster, from feelings of fear to feelings of helplessness — never knowing what symptoms I may experience day to day. On a bad day, I could be covered in sores from too much sunlight after walking the dog or laid up in bed, sick with excruciating body pain, intense nausea, and diarrhea. However, the most painful part of this experience has been that my son is a rambunctious little boy — a little boy who wants to play and run and go to the park and play baseball — and I can’t always keep up with him on the tougher days.But I don’t let that stop me.I’m determined to improve my condition and I’ve vowed to do everything I can to advocate for myself so I can get better for my son.After feeling alone for some time, I started doing research — reading everything I could get my hands on, even reaching out to doctors and professors directly to discover new strategies to help manage my GVHD through exercise and nutrition.But most importantly, I joined online support groups and connected with other people in the GVHD community. My family has always been an amazing source of support; however, talking with people who could directly understand my experience with the condition was a game-changer and a turning point for me mentally. The opportunity to get things off my chest — instead of just holding everything in — has been a great source of therapy.Today, when I’m not helping others struggling with GVHD, I balance my time between freelance writing for newspapers and magazines, working on my Board Certification in Patient Advocacy, and being a mother to my son. And when I experience flare-ups from my GVHD, I’ve learned how to manage and speak openly about them.For anyone facing GVHD, remember that being open to the community and building a reliable support system are key to taking control of your health. Everybody is different, and you know your body the best.For anyone who is looking to make a connection, please visit the GVHD Alliance for resources and support for your GVHD journey.The health information contained herein is provided for general educational purposes only. Your healthcare professional is the best source of information regarding your health. Please consult your healthcare professional if you have any questions about your health or treatment.