4 useful resources for people with graft-versus-host disease

Graft-versus-host disease (GVHD) is a condition that affects some people who have had a medical procedure called an allogenic stem cell transplant. This procedure is used to treat many different diseases, including certain cases of lymphomas and leukemias. This transplant is a multistep process that involves chemotherapy and/or radiation therapy, the harvesting of hematopoietic stem cells (HSCs) from the bone marrow of a donor, and the introduction of these stem cells into the bone marrow of the person being treated.

The goal of an allogenic stem cell transplant is to provide a person with stem cells that produce healthy white blood cells. Unfortunately, these new white blood cells may attack and damage healthy organs and tissues. This is GVHD.

Being diagnosed with GVHD can be a significant emotional and mental burden, and the diagnosis comes at a time when many people are feeling vulnerable, having already had to cope with the diagnosis and treatment of a serious illness. It’s important to remember that there are resources available that can help you navigate GVHD.

If you or a loved one is living with GVHD, the following pages can help you learn more about the condition, the treatment options, and ways you can take an active role in decisions about your health.

Leukemia & Lymphoma Society The website of the Leukemia & Lymphoma Society is a great place to start if you are looking for patient education about GVHD. Their Graft-Versus-Host-Disease Fact Sheet is worth downloading, and breaks down the different types of GVHD, how symptoms vary between those types, how GVHD is diagnosed, the medications that are used to treat GVHD, and the impact that GVHD has on a person’s health—all written in easy-to-understand language.

This is a great site to visit if you are looking for information about a specific drug, with a Drug Listing section that includes information about hundreds of different medications. You can also join their peer-to-peer support program which matches patients and caregivers with people who’ve had similar experiences with blood cancers and related conditions. If you are caring for someone with GVHD, there is a page on caregiver strategies, including worksheets to help you stay organized.

NCI Dictionary of Cancer Terms This site is worth bookmarking for those times when you come across a word or phrase and need a simple definition quickly. Definitions also include phonetic spellings and audio readings, so you can use a term at a healthcare appointment with confidence.

Be The Match (BTM) Operated by the National Marrow Donor Program, Be The Match is dedicated to helping people with blood cancers and other life-threatening illnesses find matching donors. Their site also includes pages of information about recovery after a transplant, covering topics such as physical recovery (including info on GVHD), managing finances, and coping with life after treatment, including relationships and work.

Blood & Marrow Transplant Information Network The Blood & Marrow Transplant Information Network, or BMT InfoNet, provides resources and information about all steps of the transplant process. In addition to information on GVHD and other potential complications, the page on Long Term Health Guidelines is recommended reading for anyone who has had a stem cell transplant and anyone caring for someone who has had this procedure.