Intended for US residents only
Intended for US residents only
Caregivers are often real-life superheroes when it comes to caring for loved ones after a stem cell transplant. You play an irreplaceable role in advocating for your loved one’s needs when they can’t do it for themselves.
Once home, you’re the eyes and ears of the care team—managing medicines, watching for signs of infection or graft-versus-host disease (GVHD), and even performing some medical care. In fact, it may be easier for you to notice new or changing symptoms than it is for your loved one. This can be vital at 100 days post transplant and beyond when it comes to the timely identification of subtler signs of chronic GVHD, which can aid your loved one’s care team in preventing the disease from getting worse.
Help your loved one
Download the Chronic GVHD Symptom Assessment Form to track any new or changing symptoms.
If your loved one develops GVHD after their transplant, it can be an even longer and more challenging road for everyone involved. There are 2 essential things every caregiver must do to be successful for the long haul:
Take advantage of the caregiver support services that are available through your transplant center for every stage of your transplant journey. Or browse this wide array of other support resources that are available on behalf of several advocacy groups that work to support patients, caregivers, and their families.
The caregiver’s responsibility is probably as important as the medical team. My partner was there for every appointment, she got me in the hospital, out of the hospital, and it was all her those first 100 days home and beyond. When I talk to people now who are facing a stem cell transplant, I tell them I can’t emphasize enough how important that devoted caregiver is.
Benton B.
2018 transplant recipient
Offers one-on-one sessions with a trained professional, topic-based phone support groups, and a Peer Connect program that can arrange phone calls with a trained volunteer who’s “been there” with caring for someone after stem cell transplant.
Offers individual and support group counseling by a staff of professional oncology social workers. Counseling available in English or Spanish.
Matches patients and caregivers with others who’ve been through stem cell/bone marrow transplant and can provide support. Sponsored by BMT InfoNet.
National organization dedicated to supporting and advocating for caregivers’ quality of life. Offers an online discussion forum, helpful advice, and can connect caregivers to support and resources in their areas.
(Phone: 800-546-5268)
Free service from the National Bone Marrow Transplant Link offering one-on-one phone support with trained peer support volunteers for caregivers and others after transplant.
An online support group for patients and caregivers dealing with GVHD. Members share help, advice, and information about their experiences with the disease and treatments.
Connects you with others caring for chronically ill spouses or life partners. Find local in-person support groups as well as phone support, online discussion forums, peer mentors, respite weekends, and more.
Be The Match Caregiver Toolkit
This Caregiver’s Companion series provides useful tips and advice on dealing with the stress and details of managing someone’s care long-term (specific chapters can be downloaded from the site, in English and Spanish). Upon enrollment, the caregiver receives the Companion Toolkit and may take advantage of personalized coaching sessions to provide individualized support.
GVHD Caregivers: Building Resilience for the Road to Recovery
Bone Marrow Transplant Information Network
A health psychologist shares advice on ways to cope and build resilience as a caregiver for someone affected by GVHD.
National Bone Marrow Transplant Link
Free monthly call-in event and library of recorded podcasts featuring stem cell transplant patients, caregivers, and experts in the field sharing practical advice and insights on a wide variety of transplant-related topics.
Season 4: Caregiver Perspective on the Bone Marrow/Stem Cell Journey
An 8-episode series featuring caregivers’ stories and insights. The site features a wide array of podcasts and webinars on issues related to the transplant journey and GVHD.
A multi-part Emmy-award winning film series focusing on the stories of various stem cell/bone marrow transplant survivors and their caregivers, some discussing their experiences with GVHD. Produced by National Bone Marrow Transplant Link.
Information, support, and tips for people caring for loved ones with a wide array of health challenges. Includes a searchable database of local caregiver resources and support groups.
For rallying help and support
Lets you create a personal webpage for sharing health updates and rallying support from friends and family.
Lets you organize volunteers by creating a personalized calendar for specific needs like meal preparation, chores, and more.
For staying organized
Includes a downloadable guide and worksheets for staying organized as a caregiver for blood cancer patients and others. From the Leukemia & Lymphoma Society.
Free mobile app for organizing and tracking medicines and health information.
Free online and mobile app for tracking medicines.
ARCH National Respite Network and Resource Center
Online service to learn about and locate local respite care services, which provide planned or emergency care for adults or children and temporary relief for caregivers.
Offers a searchable Services by State database that lets caregivers find respite care, resources, and other information and services available in their area. Also includes a robust list of classes, webinars, and support groups in English and Spanish.
Caregivers’ Guide for Bone Marrow/Stem Cell Transplant
This book, published by the National Bone Marrow Transplant Link, includes personal stories and advice from people who’ve cared for spouses, children, and other loved ones who’ve undergone stem cell transplant.
The Aplastic Anemia and MDS International Foundation offers this online collection of personal stories from patients, parents, spouses, and other family who are living with these and related illnesses, such as GVHD.
Voices of Hope and Healing for Bone Marrow/Stem Cell Transplant
Book of inspirational personal stories, poems, and practical advice for stem cell transplant survivors, patients, and families. Published by the National Bone Marrow Transplant Link.
Incyte Corporation is not affiliated with these organizations but may have provided funding for some of their educational programs. This is not a complete list of organizations within the GVHD community and should not be considered an endorsement by Incyte of any particular organization listed.
Click to see what steps you can take along the way to help with GVHD.
Pre-transplant
What happens before stem cell transplant?
During the hospital stay
What happens after the transplant?
Transitioning to home
What to expect after discharge
First year after transplant
What should I be aware of?
More than one year after transplant
What to keep in mind
Pre-transplant
What happens before stem cell transplant?
During the hospital stay
What happens after the transplant?
Transitioning to home
What to expect after discharge
First year after transplant
What should I be aware of?
More than one year after transplant
What to keep in mind