Living With GVHD: The Reality Behind the Illness

For many patients, the end of a stem cell transplant marks the beginning of a new chapter, but not necessarily the end of challenges. Amanda’s experience with chronic graft-versus-host disease, or GVHD, highlights a lesser-known reality: the ongoing, often invisible effects that can follow life-saving treatment.

During this discussion, Amanda sheds light on what it truly means to live with chronic GVHD, emphasizing the importance of self-advocacy and open communication with care teams.

You can read the first part of our conversation with Amanda here!

CURE: Chronic graft-versus-host disease is often described as a hidden post-transplant battle. From your perspective, what do you wish more people understood about this?

Amanda: Well, you're right; it's like an invisible illness. Sometimes when your skin is flaky or you have red spots or hives, you can see that and you would know this person is going through something. However, with graft-versus-host disease, you don't always see it. For people seeing this or having someone go through a transplant, you need to understand that you can't see all diseases or illnesses. Be patient with your loved ones, or even if you're going through it yourself, be patient and express what you're going through.

Doctors can't just know what you're thinking. You need to express that and tell them what you're going through in order to get help. You need to be your own advocate. If your legs hurt, if you have pins and needles, or if you're feeling stabbing or throbbing pain, you need to tell your doctors so you can get help.

A lot of the time, people might not understand what transplant patients are going through. Not everyone gets information about graft-versus-host disease when they're having their stem cell transplant. I've met friends who had extensive conversations with their doctor, and I also have friends who didn't have any conversation with their doctor going into the transplant. It's OK to have pain, and it's OK to be upset and not know what your body is doing, but you need to tell your doctor so that you can get that help.

For caregivers or people looking in: just because I might not be using a cane, or have my legs wrapped up, or be wearing a medical device, doesn't mean that I'm not in pain or that I'm not struggling. I think as a nation, we need to understand that physical and mental illness is OK to deal with, and just because it might be invisible to you doesn't mean the person going through it is invisible.

CURE: Thank you so much for highlighting the importance of self-advocacy. That is a wonderful transition into something else that I wanted to talk to you about. You've obviously become a passionate advocate and storyteller because of everything you've gone through. What motivated you to begin sharing your story publicly?

Amanda: Honestly, when I was very first diagnosed with leukemia, I started a page on social media just to inform my family. From informing family, they would share it with other people who might be going through a cancer diagnosis, just so they could say, "Hey, I know somebody who's going through it; maybe you guys can chat." What I didn't realize was how alone I felt in that hospital. For me, I used writing as therapy. I would write different things or journal blogs just to get what I was feeling off of my chest.

When you're upset and you write something down, crumble it up and toss it — that's what blogging was for me, and it truly helped me throughout everything. I would write articles, read articles from other people, watch TED Talks and look up different organizations just to feel like I wasn't alone. Then, when I was walking around the hospital with my chemo pole, I got to meet other people in the hospital and talk with them. I realized I'm not the only person who feels alone. I'm not the only parent who had to leave their child.

Something clicked in my brain, and I truly felt like that was a purpose for me. I decided to write an article and send it out, or reach out to an online forum. In doing that, I found my voice. Advocacy really spoke to me. I wanted to help other people going through this, other parents or young people. That led me to Sanofi, where I am a paid spokesperson for GVHD. I love being able to utilize what I have been through to give others grace in their journey.

Someone reading an article might feel, "I have been through this, I have suffered, and mentally I just don't know what to do," but that article might help them realize it is worth fighting for. Advocacy has helped me so much in my own journey that I truly feel like it's my purpose.

CURE: Thank you so much. It's awesome to hear about what you do, because a common thread between anyone diagnosed with cancer is that they feel so lonely when first diagnosed. I really admire you for going out of your comfort zone to spread the word that people are not alone.

Amanda: I want other people to know they aren't alone. Leaving my son when he was 3 and a half was so difficult. He would cry and be upset. He couldn't come see me often; the doctors would let him come up once a week, but he didn't understand why I had so many "sleepovers" at the hospital. I was so depressed because I felt like I was a bad parent because I wasn't there.

Being able to talk with my family and put my son into therapy, and the way we navigated that as a family, made me realize that other people are going through that. It might be hard for me to share, but at the end of the day, there's somebody else out there who feels that pain, hurt, anger and abandonment.

Disclosures: Amanda is a paid Sanofi spokesperson and was engaged to share her story with chronic GVHD, but individual experiences may vary.

Transcript has been edited for clarity and conciseness.

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