Jo-Ann C.

GVHD has caused skin, joint, vision, and cognitive challenges, but thankfully without organ involvement. With early treatment, strong support, and faith, I was able to manage my symptoms, finish my degree during treatment, and continue living and working with gratitude.

Tell us how GVHD is affecting your life, or that of a loved one.
GVHD both acute and chronic have had an impact on my life. Luckily, my issues weren’t internal so no organ involvement. But the aGVHD which was skin and nails was uncomfortable and limiting at first. It required more steps each day to resolve it. cGVHD started with waking up one day and not being able to move my wrists or ankles! I still have some mobility issues. Later onset was dry eye that, to some degree, affects my vision and cognitive trouble which seems to come and go. I’m not sure if it is GVHD related, but I did have a sudden onset of tinnitus, too. It is unnerving to say the least. I feel blessed because my issues are not extreme and I function well on a daily basis even to the point of being able to work. I don’t focus or hero on any of it so sometimes I have to think about how it does impact my days.

What is your message of hope? What inspires you to continue the fight against GVHD?
I feel I was extremely fortunate. First, because I had an amazing donor and was still alive! Second, my GVHD issues both acute and chronic were addressed right away. For me, JAKAFI was a life saver. I am grateful to not only have the chance to use that medication but I am note off of it for some time. Most of my issues have resolved to a point of tolerability. In the beginning, I participated in support groups that made all the difference in my emotional strength. 
This is my graduation picture because I managed to go through school and get my undergraduate degree all while being treated at UPENN! That is what can happen when you have and TAKE the story that is available to you during a medical crisis! Having faith is everything!