GVHD Care Starts at Home: How a Couple Learned to Lean on Each Other to Battle this Rare Disease

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The battle against cancer starts at home. That’s where people often spot the first signs and where they spend time managing the symptoms that come with it. Eight years into their marriage, David noticed his wife Linda was experiencing dizziness and headaches. His concern led Linda to visit the doctor, where she was diagnosed with a rare blood cancer.

Despite a poor prognosis, David and Linda remained strong, and Linda eventually received a stem cell transplantation, which resolved one potentially life-threatening condition while triggering another – graft-versus-host disease (GVHD). GVHD may occur following an allogeneic stem cell transplantation where the donor immune cells attack the recipient’s organ and tissues. This condition does not always occur after transplantation surgery. However, when it does, GVHD can manifest several ways and at different times following a transplantation.

Linda describes her transplantation surgery as “informed and preemptive” before and after her surgery. She recalls a series of classes and a wealth of educational resources explaining the potential of developing GVHD and what exactly the condition could entail. Because of that early education, Linda and her health care team were able to spot the first signs of her GVHD – a skin rash – right away.

While Linda feels fortunate that she was prepared for the potential of developing this new condition, she attributes her continued success battling GVHD to the vigilance and symptom management that happened at home. A body fighting GVHD can be affected in different places and ways, ranging in severity and making the condition difficult to diagnose and predict.

“We keep my GVHD, and all the ways it might be expressed — whether it’s skin rashes, difficulty breathing, persistent cough or trouble seeing — top of mind, and discuss them in my appointments every time,” said Linda. “Because, in the end, you don’t know for sure if or how GVHD will express itself again. Don’t be bashful: if you see something, say something.”

GVHD can come in many forms, which can make spotting, testing and managing symptoms a sometimes labor-intensive process of elimination. This disease’s unpredictable and changing nature can lead those battling the condition to brush off smaller manifestations, or attribute one such as a headache, to an everyday ailment.

That’s where caregivers step in. Take Linda’s husband, David: he’s not only her rock to lean on, but a first line of defense in spotting and working to help manage new symptoms. David helps keep a close eye on any new or recurring manifestations Linda’s GVHD might take, prompting discussions with Linda’s health care team.

“The important thing is to find balance between staying educated and aware of symptoms, but also not delaying or getting in the way of official health care advice,” said David. “GVHD care starts at home, and I strive to remain hyper-aware of any changes, while maintaining balance between being Linda’s caregiver and her husband.”

While their home is the front line for Linda’s care, the couple knows it’s okay—and imperative—that they’re also comfortable speaking openly with their health care team.

“I’m never shy about going to my medical team with anything and everything I feel might be important in the management of my GVHD,” said Linda. “David and I know this is a treatable condition, so, I’m never afraid to ask questions or reach out to my doctor.” The pair lean on each other, as well as resources such as GVHDnow and symptom checklists, to encourage proactive conversations with Linda’s medical team.

“Don’t be afraid of GVHD. Be prepared for it, and deal with it as it comes. Lean on your caregivers, communicate with your health care team, and work together, it can be manageable.”—Linda and David

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