Influencer from Ceará shares diagnosis of metastasis after living with rare disease
Karine of Sousa, known as Káh Felipe, publicly revealed that he was diagnosed with metastasis in the bones, liver and lung. The influencer from Ceará, with more than 630 thousand followers on Instagram, shared the news in a video published on social media alongside her husband, Edmilson Alcântara. The announcement came a month after she was diagnosed with advanced cancer.
Káh Felipe has lived for years with Xeroderma Pigmentoso, an extremely rare genetic condition that affects approximately one person in every 1 million. The discovery of metastasis marks a new chapter in her health journey, transforming her routine and the way she shares her experiences on the internet.
Revelação emotional diagnosis
In the video released, the influencer expresses the difficulty of assimilating the news. “Today I found the courage to share one of the most difficult news of my life. The exams showed metastasis in the bones, liver and lungs… And, since then, my days have never been the same. Agora I became a palliative patient in the terminal phase…”, lamented Káh Felipe.
Ela explained that in recent months she had been experiencing severe pain that left her dependent on medication. Morphine, a powerful painkiller, is administered every four hours. Quando the medication does not provide enough relief, the influencer needs to turn to Instituto of Câncer of Ceará for emergency care. The doctor accompanying her estimated survival of six months to two years.
Apesar’s challenging prognosis, Káh Felipe expressed determination in his future plans. “I don’t know how much time I have, but I want to live the extraordinary of Deus. Quero make dreams come true, live the life I’ve always loved and dreamed of living,” he said. Ela acknowledged that the days are uncertain and full of suffering, but reaffirmed his commitment not to give up.
Desafios emotional and psychological
The influencer spared no details when addressing the emotional aspects of the terminal illness. “It’s been difficult to assimilate everything. Difícil to understand, difficult to accept, difficult to remain strong all the time. Além of physical pain, there is a silent pain that no one sees: the emotional and psychological pain… The fear, the sleepless nights, the thoughts, the uncertainty of tomorrow”, he commented in the publication.
Ela also shared how this experience changed his perspective on life. “Hearing about life time changes everything within us. Faz makes us see life in a different way, valuing every hug, every prayer, every simple moment”, he added. Essas reflections reveal the profound impact that the metastasis diagnosis had on his everyday life and priorities.
Edmilson Alcântara, Káh Felipe’s husband, also took a stand in the released video. Emocionado, he described the difficulty of witnessing his wife’s illness. “Eu I’m watching the strongest woman in this world crumble, cry, ask herself why. Eu I’m angry. Eu I don’t know what to do. Eu I have nothing to do. I can’t do anything except give my support and be the strongest I can in the middle of all this”, he said. Edmilson also revealed that he often feels fragile, crying more than his partner due to the circumstances.
Trajetória with Xeroderma Pigmentoso
Káh Felipe has lived with Xeroderma Pigmentoso since childhood. The first signs of the disease appeared at the age of three, when spots appeared on her skin that the family initially interpreted as simple freckles. Over time, the condition developed, resulting in skin tumors that required continuous monitoring and specialized medical treatment.
Over the years, the influencer turned her experience with the rare disease into content for social media. Ela regularly shares details about her routine, the challenges of living with Xeroderma Pigmentoso and the care needed to protect her health. Essa’s opening gained a significant community of followers who follow his journey.
Káh Felipe is married to Edmilson Alcântara and is the mother of one daughter. The family maintains a relatively private life despite the influencer’s digital presence. Seu’s work on social media transcends entertainment, functioning as an education tool about rare diseases and health awareness.
What is Xeroderma Pigmentoso
Sociedade Brasileira of Dermatologia explains that Xeroderma Pigmentoso is a non-contagious genetic disease that affects men and women equally. Ela is characterized by extreme sensitivity to ultraviolet radiation present in sunlight. “It therefore affects the areas of the body most exposed to the sun, such as the skin and eyes. In people with this problem, after exposure to sunlight, a ‘defect’ appears in DNA repair, with the possibility of the skin forming cutaneous cancer”, explained the institution.
Segundo North American and European statistics, the chances of being born with XP are approximately one in every 1 million people. Isso makes the condition an extremely rare condition in the world population. As it is a hereditary pathology, there is a risk of genetic transmission to family members of carriers.
Alguns individuals diagnosed with XP may experience neurological involvement, although this is rare in most cases. The progression of the disease varies depending on the individual, as does the speed at which malignant skin tumors develop.
Tratamento and prospects
Treatment of Xeroderma Pigmentoso involves surgical removal of any tumors and application of topical therapies with appropriate medications. Não There is a definitive cure for the disease, but there are ways to control its symptoms and prevent accelerated tumor progression.
Sociedade Brasileira of Dermatologia emphasizes the importance of the emotional and social aspect for people with the disease. Segundo the institution, individuals with XP must receive friendship and understanding, and it is not advisable for them to abstain from social interaction. With adequate photoprotection measures, such as broad-spectrum sunscreen, special clothing and protective glasses, sufferers can participate in community activities.
Vale emphasize that XP does not contract through direct physical contact, secretions or aerosols. Pessoas with the disease can attend public environments such as schools and daycare centers without risk of transmission, as long as they use appropriate sun protection. Social inclusion and participation in community activities are fundamental to the emotional health of sufferers.
