Patient Story: Hope for a new method of urethral tissue regeneration

In 2020, during the period when COVID-19 still had a daily impact on everyday life, a 39‑year‑old IT employee at a wholesale company began experiencing vague complaints such as occasional blood in the urine and difficulty urinating due to a narrowed urethra. Although he delayed visiting his GP for some time, the official, life‑changing diagnosis soon followed: it was amyloidosis.

This disease, a rare protein deposition disorder in which misfolded proteins clump together and narrow the urethra, was discovered at an early stage thanks to a vigilant pathologist at Radboud UMC who carried out a tissue biopsy. The condition, in which the disease was localised in the urethra or surrounding tissue, was considered an unusual presentation. This type, Localised Amyloidosis, is rarely described, making the interviewee one of the few known patients worldwide. His urologist regarded the speed of diagnosis as even more remarkable than the rarity of the disease itself: “I was apparently number fifty among the documented cases.”

His journey took him from Radboud to UMC Utrecht, where specific expertise on this rare condition was available. The complexity of the case required close multidisciplinary collaboration between Urology, Pathology and Haematology. Although the condition was initially classified as localised, the persistent narrowing and the haematologist’s findings later led to treatment for amyloidosis as a precursor to bone marrow cancer, or AL‑amyloidosis. This resulted in a course of chemotherapy, alongside a total of five urological operations.

It soon became clear that working was no longer possible due to the mental burden of the disease and the uncertainty brought by various complications. The operations in particular had a heavy impact on the patient. One especially painful aspect was the reconstruction of the urethra using cheek mucosa. This caused significant complications, bleeding, and daily irritation from scarring in the mouth. In a later operation, foreskin tissue was used instead, which proved more tolerable.

The impact on daily life is immense. The patient must now dilate (stretch) the urethra to prevent new strictures, a task he describes as a “nightmare” and mentally very difficult. Urination is no longer straightforward; he must urinate sitting down and fears accidents, leading to social insecurity. In addition, the uncertainty of a possible emergency admission hangs over his life like a “dark cloud.”

The patient stresses the importance of being actively involved in one’s own care pathway. Because knowledge about his rare disease changed rapidly, he often had to search for information himself and even prompt doctors to consult with a haematologist. “If you don’t have the time or can’t read English, you simply can’t absorb that information.” He is grateful for the multidisciplinary approach in Utrecht but sometimes missed emotional support, wishing that young doctors would pay more attention to the psychosocial aspects of illness.

This patient’s story is a powerful testimony to the need for innovative, less invasive solutions for urological conditions and highlights the crucial importance of the STRONG‑UR project.

The STRONG‑UR project focuses on regenerating tissue using 3D printing and bio‑ink to create a new, patient‑specific urethra. This project could eliminate the need for invasive cheek mucosa grafts and their complications. The patient is enthusiastic: “That sounds truly spectacular.”

He contributes by donating his blood and tissue to the biobank, motivated by his wish to offer future patients a better, less invasive, and more sustainable solution. “Perhaps not for me, because of course, it will take years. But for those who come after me.”

Despite the arduous journey, his decision to donate tissue and blood to the biobank underscores the necessity of translational research in urology to improve standards of care for complex and rare urethral conditions. The STRONG‑UR consortium brings together 12 partners from six European countries across different disciplines, each contributing to the project, which aims to present its first results in 2028 and further develop them in a clinical setting.