Living with chronic GVHD

Bringing Clarity to cGVHD

ON-SCREEN TEXT: BRINGING CLARITY TO cGVHD

cGVHD, chronic graft-versus-host disease

ON-SCREEN TEXT: If cGVHD were an animal…

ON-SCREEN TEXT: Vera, age 51 years, diagnosed with cGVHD in 2018

VERA: If chronic GVHD were an animal, it would be a rhino. Rhinos are very scary to me. They’ve got tough skin. I associate that with the hardening of the skin on my legs.

ON-SCREEN TEXT: See what others had to say in a little bit.

ON-SCREEN TEXT: Understanding cGVHD can be almost as challenging as living with the disease.

ON-SCREEN TEXT: How would you describe cGVHD in 3 words?

ON-SCREEN TEXT: Russ, age 60 years, diagnosed with cGVHD in 2018

RUSS: Fatigue. Constant discomfort. Pain.

ON-SCREEN TEXT: Jo-Anne, caregiver

JO-ANNE: Mine are so shallow compared with his—nuisance, disappointing and unending.

ON-SCREEN TEXT: Jennifer, age 47 years, diagnosed with cGVHD in 2018

JENNIFER: Constant, vigorous and debilitating.

ON-SCREEN TEXT: Gail, age 72 years, diagnosed with cGVHD in 2018

GAIL: Life-altering, fatiguing and challenging.

ON-SCREEN TEXT: Marlyn, age 47 years, diagnosed with cGVHD in 2018

MARLYN: Fatigue, dryness and long-term.

VERA: Treatable, painful and life-changing.

ON-SCREEN TEXT: Explaining cGVHD to loved ones can be complex, and some cope with it better than others.

JENNIFER: I feel like a broken record, trying to educate people and remind them. You see makeup or hair, but you don't see the bald head from treatments. It's not what it seems. It's a mask, if you will.

MARLYN: How do I explain what I'm going through to my children or my family? I explain it to them as if it's just something that I have to go through post transplant.

RUSS: One of the research nurses had given us some tips about how to measure progress, and that helped me a lot. In going back to work, it's not whether or not I was better this week than last week. It’s was my week better than 3 months ago. Even with the symptoms of chronic GVHD, I was able to get back to work full-time. I just had to phase it in slowly over time.

ON-SCREEN TEXT: If cGVHD were an animal, what would it be?

MARLYN: I’d describe it as a chameleon, because it changes color, location and severity. It changes itself every day. It has good days and bad days.

JO-ANNE: To me, it's like a fly that’s always hanging around. It can irritate you to death and buzz you. Sometimes it leaves you alone, and you don’t notice it as much. It can really make you feel like you just can't relax. It's there in your life, and you can't always go about doing what you want.

JENNIFER: Chronic GVHD would definitely be a zebra, because its stripes are mysterious and nobody really understands it. But it's fascinating, in and of itself. It's a by-product of a cure for a deadly disease. So, it's beautiful in 1 sense because it helps me in a weird way.

GAIL: I would choose a cat. We had a pet cat who would climb on my lap. I would stroke her, and she’d purr and purr. Then, out of the blue, she’d bite me.

RUSS: I would call it lice. It's annoying, embarrassing and hard to get rid of.

ON-SCREEN TEXT: Understanding cGVHD is just one of many challenges for patients

ON-SCREEN TEXT: Special thanks to BMT Infonet and our video participants for their support of this project

Patients were compensated for their time

MAT-US-2200728-v1.0-02/2022

The Psychological Impact of Chronic GVHD

ON-SCREEN TEXT: THE PSYCHOLOGICAL IMPACT OF cGVHD

cGVHD, chronic graft-versus-host disease.

JENNIFER: If they told me, “By the way, after this, you’re going to experience another ‘nightmare,’” I don’t know if I would have wanted to know. I don’t know if I would have had the strength to fight the first battle if I knew another battle was right behind it.

ON-SCREEN TEXT: The impact of cGVHD on patients is more than physical. It affects their psychological and emotional health, as well. Many find that cGVHD is often a greater burden than they expected, leaving them feeling overwhelmed.

ON-SCREEN TEXT: Marlyn, age 47 years, diagnosed with cGVHD in 2018

MARLYN: My expectations were that I would have to take only 1 medication—it would take care of everything, and I would only take the medication for 6 months tops. So, has it matched my expectations? Definitely not.

ON-SCREEN TEXT: Jo-Anne, caregiver

JO-ANNE: You’re not expecting it. It’s like, “Well, I thought if I survived the transplant, I’m done.” But in reality, it can go on with you for the rest of your life. If you can set your expectations upfront and realize that just because you survived doesn’t mean it’s over, that helps a bit.

ON-SCREEN TEXT: cGVHD impacts relationships in unpredictable ways.

ON-SCREEN TEXT: Gail, age 72 years, diagnosed with cGVHD in 2018

GAIL: It definitely impacts my relationship with my husband. I don’t have the energy to contribute as much as I would like.

JENNIFER: Chronic GVHD has affected my loved ones tremendously. My caregiver left me. It was too heavy for him. That was traumatic for me, and traumatic for him as well. I don’t judge. My children don’t understand. My mom, sister and all my other loved ones don’t get it. It’s an unknown disease. They see me and think my skin looks fine. So, it’s affected everybody and my ability to be who I was. I’m kind of a prisoner to this disease.

MARLYN: I had been more outgoing before with my friends, but now I feel like I have my limitations with going out. Even with hiking—going and just participating—I tire easier than before. They can go from sunlight to sundown. I can’t do that. I can probably only participate in 1 or 2 activities. My family lives across the Pacific. I have not seen them in a while because my travel has been restricted since my diagnosis, mostly because I’m immunosuppressed.

VERA: You find out who your friends are and how people deal with you when you’re having a bad day, or when you’re not breathing so well. Some people deal with it 1 way, and other people deal with it another. It’s definitely been an eye-opener in that respect.

ON-SCREEN TEXT: Russ, age 60 years, diagnosed with cGVHD in 2018

RUSS: I would say a positive thing that has come out of the diagnosis is my ability to connect with other people—just that emotional intelligence. I sometimes get a feeling I need to ask somebody a question.

ON-SCREEN TEXT: Despite the condition, patients are still able to recognize some positives in their lives.

VERA: My illness has probably brought people closer to me in the sense of friends and my sister. I have 2 sisters that live here, but Maggie is the primary one that has been my guardian angel throughout this because she’s a nurse.

MARLYN: My husband has been with me since day 1 of my cancer journey. Since chronic GVHD, he’s had to drive me to my transplant hospital, which is 2 hours away from home. He had to take the day off in order to drive me to and from. I didn’t help him with the driving, since I was so tired just coming home from the hospital. I actually slept through the drive. But it’s not just that he drove me. He wanted to be there.

JO-ANNE: We’ve had a wide swath of friends throughout his entire illness and recovery. I connected with people through an organization where you can write about what’s going on. We have hundreds and hundreds of people praying for him and walking through this with us.

ON-SCREEN TEXT: cGVHD impacts every aspect of patients’ lives

ON-SCREEN TEXT: Special thanks to BMT Infonet and our video participants for their support of this project

MAT-US-2200729-v1.0-02/2022

The Impact of Chronic GVHD on Quality of Life

ON-SCREEN TEXT: THE IMPACT OF cGVHD ON QUALITY OF LIFE cGVHD, chronic graft-versus-host disease.

ON-SCREEN TEXT: Gail, age 72 years, diagnosed with cGVHD in 2018

GAIL: Chronic GVHD has made a difference in every aspect of my life—what I do, who I see, who I spend time with and so many things.

ON-SCREEN TEXT: Patients have a significant QOL burden that makes every day a struggle.

QOL, quality of life.

ON-SCREEN TEXT: Realizing they have cGVHD is often overwhelming.

JENNIFER: I was still in the hospital and I noticed I had a rash. The doctors suspected it was chronic GVHD.

ON-SCREEN TEXT: Russ, age 60 years, diagnosed with cGVHD in 2018

RUSS: I had 4 different symptoms occur simultaneously. There was a skin condition all over my body.

VERA: I was so fatigued. I could barely walk from point A to B. It was a struggle.

JENNIFER: When the symptoms occurred, I was devastated. I felt like I had gone through a marathon to get this far. When I received the second diagnosis, it was almost more devastating than the first.

ON-SCREEN TEXT: cGVHD has a significant impact on patients’ daily lives.

GAIL: I have chronic GVHD of the eyes, so my eyes are dry. Some days I have to use eye drops. Other days, I have very few problems.

RUSS: Chronic GVHD changed the way I dress to go outside. I’m always in long sleeves, even in the heat of Florida. I wear a hat, face cover and neck cover. The kids in the neighborhood are entertained when I go out to do yard work.

VERA: My lung symptoms are being maintained. My skin flares up every now and then. I had a bout on my shins and my breasts, which progressed to my toes, and then further up my shins and another area of my body.

JENNIFER: Chronic GVHD has impacted every facet of my life. I can’t go out in the sun. 85% of my skin is affected by chronic GVHD. I can’t be a mom to my children or do outdoor activities. My mobility is limited by joint stiffness and pain. I am fatigued, and I sleep a lot.

ON-SCREEN TEXT: Marlyn, age 47 years, diagnosed with cGVHD since 2018

MARLYN: I chose to work part-time because of fatigue. I’ve also noticed my ability to focus and concentrate on details has been affected by chronic GVHD.

ON-SCREEN TEXT: Jo-Anne, caregiver

JO-ANNE: As a caregiver, the hardest thing is realizing you’re in it together. Even though it’s not happening to you, you’re along for the ride. It’s hard just knowing there’s limitations on your life because of that person. It’s part of being married and part of the process, but you definitely struggle with it.

ON-SCREEN TEXT: The symptoms of cGVHD often prevent patients from being able to do the things they want.

JENNIFER: Because of fibrosis, there are definitely things I can’t do now that I used to be able to do. For example, fully lifting my arms, exercising outside, running or lifting heavy items. It’s like a rubber band that’s been tightened.

VERA: Walking was my form of exercise. I loved getting out and being in the fresh air.

JO-ANNE: It has impacted his work. He hasn't taken any international trips since he contracted chronic GVHD, and he has taken far fewer domestic trips. Travel used to be a bigger part of our job.

MARLYN: Traveling is the main thing I have enjoyed. And even as a child, I was hoping to travel the world.

GAIL: I was a floral designer. I had my own business doing wedding flowers. I can’t work in rooms full of flowers anymore.

ON-SCREEN TEXT: cGVHD impacts every aspect of patients’ lives

ON-SCREEN TEXT: Special thanks to BMT Infonet and our video participants for their support of this project

MAT-US-2200754-v1.0-02/2022

USE IN CHRONIC GVHD

Living with chronic GVHD

What happens in your body when you have chronic GVHD?

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Management of chronic GVHD

Medicines that treat chronic GVHD

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