In order to address challenges around transplantation patients and physicians from ERN-lung are joining forces.Lung transplantation is to be considered the only available cure for a number of rare respiratory diseases that are currently still without a pharmaceutical cure and also for those patients whose condition is โ despite on medication โ deteriorating.
Patients are in big need of support especially while on the waiting list, but assistance is still needed post-operation. Surveys highlights that those who are on the waiting list need to deal with additional stressors on top of the burdens ensuing from their underlying disease(s) such as dependency, less control over life and waiting for a donor.
Transplanted patients usually say that this is their second life: it does not mean, however, that there are no barriers and difficulties to cope with as life-long medication is to be taken. It may also occur that due to unknown reasons the lung function declines following lung transplantation which means that post-transplant syndromes are themselves listed as rare diseases.
The support cannot be limited to individual level, but transplantation need to be approached from various angels:
- better understanding is needed to identify when the patients should be referred to transplantation to avoid cases where patientsโ unsatisfactory condition may negatively impact the success of the transplantation,
- best practices need to be explored and implemented on how to fast-track patients who are already on the waiting list but their condition worsening more rapidly than expected
- reliable sources of information are needed preferably in many languages to satisfy patientsโ information needs in these challenging time of their life
- the involvement of politicians and decisionmakers is needed to make sure that processes and incentives are in place to save as many organs as possible.
The Transplantation Working Group welcomes anyone who is happy to contribute to our common cause!
