Symposium | Patient’s perspective: My journey with GvHD

During the 52nd Annual Meeting of the EBMT, the GvHD Hub held a live symposium on March 24, 2026, titled “Focusing GvHD care through the eyes of providers and patients: Practical insights on ECP”. Here, we share a presentation by Matea Meden, Sisan, HR, describing her experience of living with graft-versus-host disease (GvHD).

Matea describes her journey with GvHD, focusing on its profound impact on her physical health, emotional wellbeing, and overall quality of life. She outlines her treatment pathway, which included steroids, ruxolitinib, and extracorporeal photopheresis (ECP). She highlights both the practical and physical challenges of ECP alongside the gradual clinical improvements she experienced. Matea also shares advice for patients with GvHD, encouraging them to trust the ECP treatment process, communicate openly with their healthcare team, and draw strength from their family, peers, and support networks.

Key points

• In 2019, Matea was diagnosed with acute lymphoblastic leukemia (ALL) in 2019. Following a stem cell transplant from an unrelated donor, Matea developed Grade 3 acute GvHD (aGvHD) of the skin and liver (Figure 1).

• GvHD had a profound impact on her quality of life, including multiple associated complications, such as menstrual bleeding and abdominal pain, muscle weakness, influenza, pneumonia, and rash.
• Matea reflected on the additional burden of the COVID‑19 pandemic, noting that hospital visitor restrictions contributed to feelings of powerlessness, loneliness, and fear.
• ECP was recommended on Day 35 post-transplant, as conventional therapies did not control Matea’s symptoms adequately (Figure 2).

• Reflecting on her experience with ECP therapy (Figure 3), Matea noted that although clinical improvements were gradual, it was reassuring to see the positive effects of treatment.

• Matea offers advice for GvHD care teams (Figure 4) and for patients with GvHD (Figure 5).

• To conclude, Matea reflects that true recovery involves accepting vulnerability without guilt, while allowing space for happiness, support, and the reclaiming of a life that is rightfully deserved.

Q&A

• Matea explains that ECP treatment itself was not uncomfortable, but it was time‑consuming and physically draining. However, she notes that this exhaustion was part of the broader toll of everything she had already experienced throughout her GvHD journey.