Chronic GvHD: the “invisible” transplant complication that can change patients’ lives

Chronic graft-versus-host disease (chronic GvHD) is one of the most complex complications following an allogeneic hematopoietic stem cell transplant (donor bone marrow transplant). It often appears when it seems that “the worst is over”: after overcoming the acute phase of the transplant and with the expectation of gradually returning to normal life. However, its impact can be profound and long-lasting.

This reality was the focus of the recent event “Beyond the transplant: facing chronic GvHD and its impact on quality of life”, which brought together healthcare professionals, patient associations and people living with this complication. Marta Fernández, from the Patient Experience Program of the Josep Carreras Foundation, also took part in the session.

A disease that is hard to see, but highly debilitating

Chronic GvHD is often described as an “invisible” disease because it can affect multiple organs and systems — skin, eyes, mucous membranes, joints, lungs, liver, digestive system or the genital area — and may begin with subtle symptoms that go unnoticed or are normalized. For this reason, prevention, early detection and timely diagnosis are key to minimizing its impact and reducing potential long-term effects.

During the event, speakers also emphasized the need for a multidisciplinary approach, involving coordinated collaboration among different specialists, in order to provide comprehensive care for patients.

Quality of life at the center of care

At the Josep Carreras Foundation, we stress that raising awareness of chronic GvHD is not only about explaining what it is, but also about highlighting how it affects everyday life: physical limitations, fatigue, pain, functional difficulties, barriers in daily activities and a significant emotional burden.

The testimonies shared during the event clearly showed that living with chronic GvHD can involve persistent problems — such as ocular, skin, digestive or joint complications — and requires constant adaptation to situations that are often not fully understood by others.

When it affects children and adolescents

In pediatric patients, chronic GvHD can also impact key stages of development, influencing growth, metabolism or the endocrine system, with physical and psychological consequences that require highly specialized care.

Our commitment

At the Josep Carreras Foundation, we work to ensure that patients and their families do not feel alone when facing complications such as chronic GvHD. We do so by promoting rigorous information, support resources and care centered on the real experience of the patient, beyond the strictly clinical process.

You can find more information in our educational article “Graft-versus-Host Disease”, available on the Foundation’s blog.