JOHN’S STORY

Being diagnosed with a rare disease was, for me, life-changing. I had never heard of penile cancer until my diagnosis. Currently, the only treatment is surgery; the cancer must be cut out, it’s just a matter of how much! 

Despite months of misdiagnosis (not uncommon with rare diseases), you find yourself challenged both physically and psychologically. My surgery was successful in removing the cancer but left me with a life-limiting and incurable condition – Lymphoedema. 

With a rare disease, you are unlikely to meet anyone with the same condition. You soon discover it can be a lonely place with very negative attitudes and stigma that prevent people from coming forward for treatment. I soon realised that men are dying unnecessarily because of ignorance, both within the general population and within primary healthcare; it was time to try to raise awareness. 

Fortunately, I was introduced to ERN eUROGEN, a remarkable organisation that is truly patient-centred. I have been supported to present at international conferences, to take part in webinars, working groups, and to undertake a survey of patients with penile cancer, the largest of its kind ever undertaken.  Currently, I am a patient advocate on the Penile Cancer Guidelines Panel for the European Association of Urology (EAU) and the ERN eUROGEN ePAG Chair.  We have just initiated Rare PREPARE, a cross-ERN initiative to bring together patients and clinicians to co-design a generic Question Prompt List (QPL) to improve communication between patients with rare and complex conditions and their clinicians during consultations.