An influencer who documented the challenges of living with a rare genetic condition has tragically died aged 36.
Married mother-of-four Káh Felipe died on Friday (24 July) after spending 18 days in hospital.
She had spent the last few months relying on regular doses of morphine to control the pain caused by terminal metastatic cancer that had spread to her bones, liver and lungs.
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Káh, whose real name was Karine de Sousa, had a rare condition called xeroderma pigmentosum (XP).
She first showed signs of XP when she was just three years old, developing skin marks that her family initially believed were freckles.
However, the disease progressed and eventually caused skin tumours, as reported by Need To Know.
XP is a rare, lifelong genetic condition inherited from a person’s parents.
People with XP cannot effectively repair DNA damage caused by ultraviolet radiation from sunlight, leaving them at an extremely high risk of developing skin cancer.
According to the Brazilian Society of Dermatology, the condition affects around one in a million people.
There is currently no known cure.
Káh shared her daily life and the challenges of living with XP with her more than 800,000 Instagram followers.
She regularly posted photos and videos documenting her treatment, hospital stays and moments with her husband and youngest daughter, who is just three years old.
Káh revealed in April that doctors had diagnosed her with metastatic cancer and given her a life expectancy of between six months and two years.
She said in a video: “Unfortunately, it’s at a very advanced stage. Sadly, with today’s medicine, there’s nothing more that can be done. There is no cure.”
Káh explained that in recent months she had been suffering severe pain and needed morphine every four hours.
When the medication failed to control the pain, she had to visit the emergency department at the Ceará Cancer Institute in Fortaleza, Brazil.
Her husband, Edmilson Alcântara, also shared their family life on social media.
He wrote in his final post with Káh: “Sharing my life with you over these eight years has been, and continues to be, a blessing.
“You transformed my life, turned our house into a home and gave me the happiest moments I could ever have experienced.”
In a farewell message, Káh’s family paid tribute, writing: “Our warrior fulfilled her mission and left behind a legacy of strength, courage and, above all, faith.
“She believed until the very end and fought with all her strength, never losing hope.”
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