Have you ever heard of the rare genetic syndrome called Xeroderma pigmentosum (XP)? There are eight genes involved in XP and prognosis can vary from severely affected with aggressive tumour progression to a mild clinical manifestation of skin pigmentation abnormalities. This wide range of symptoms is related to which gene is not functioning correctly but also, and primarily, to the level of photoprotection adhered to and sun exposure is the main cause of clinical manifestations.

This is because XP patients are born without a correction mechanism known as the DNA repair mechanism which is responsible for maintaining DNA integrity. Sun exposure is one of the main sources of DNA damage and the unrepaired lesions cause mutations which, in turn, lead to a high frequency of cancer. When it comes to XP, clinical manifestations often include skin cancer, ophthalmological malignancies and, in some cases, neurological abnormalities. That´s why XP patients need to avoid ANY exposure to the sun and adhere to strict photoprotection. This is not an easy task for patients, and it’s even harder for their parents, relatives and the community around them.

AuroraXP is a movement for education and prevention created by Dr. Ligia Pereira Castro, patient advocate at Inspire2Live: “During the last 10 years of research and direct contact with patients, families and their loved ones, I could see the consequences in their skin of the huge stigma that comes with XP”. This stigma is born from lack of information which generates prejudice and shame. These are the worst villains when it comes to XP, because they make self-care and social insertion even harder, not to mention access to health professionals.

In addition to gathering information, the AuroraXP movement aims to promote reflection about the level of photoprotection adopted today and how this can be increased. We’ve created an empathy map to put ourselves in the shoes of patients and relatives, focussing on their pain, needs, fears, thoughts and feelings. We estimate that there are currently about 1 000 people with XP in Brazil and most of them unfortunately do not achieve adequate photoprotection. Our aim is to improve this by raising levels of awareness and empathy.

Let´s do it together!

Dr. Ligia Pereira Castro
Patient Advocate Inspire2Live