Ichthyosis,a rare genetic skin disorder affecting approximately 1 in 250,000 births,manifests through severe dryness,scaling,and redness of the skin,often leading to discomfort and mobility challenges. in spain, around 300 individuals are diagnosed with this condition, which can also impact internal organs. The Spanish Ichthyosis Association (ASIC) is dedicated to enhancing the quality of life for those affected and advancing research for better treatments. Dermatologist Dr. Ángela Hernández Martín highlights that ichthyosis results from a genetic alteration in the epidermis, causing skin to resemble fish scales, a characteristic reflected in its name derived from the Greek word “Ichtys.” With over 150 identified genetic variations, ichthyosis presents diverse challenges, including heat intolerance and impaired sweating, necessitating ongoing support and awareness for affected individuals.
ichthyosis, a skin condition that can considerably impact quality of life, is categorized into syndromic and non-syndromic types.Syndromic ichthyosis affects multiple organs, including the nervous and immune systems, while non-syndromic forms primarily impact the skin, potentially leading to complications such as eye and hearing issues. Currently, there is no cure for ichthyosis, but treatments focus on symptom relief through moisturizers, long baths, and oral retinoids. A recent survey by Pierre Fabre laboratories revealed that over 61% of ichthyosis patients in Europe are women, many of whom report emotional challenges like low self-esteem and social isolation due to their condition. Dermatologists emphasize the importance of daily skin care routines to manage symptoms effectively.Ichthyosis, a rare skin disorder, significantly impacts the lives of those affected, leading to social isolation and economic strain due to the high cost of necessary skincare products, which are not covered by social security. according to a recent study, 82% of Spaniards view ichthyosis as a disability that hampers physical activity, with patients frequently enough experiencing heat intolerance and hypohidrosis, making sports participation challenging. José María Soria de Francisco, president of the Spanish Ichthyosis Association (ASIC), emphasizes the need for greater awareness and understanding of this condition to improve the quality of life for patients and reduce stigma surrounding the disease.
Q&A with Dr. Ángela Hernández Martín on Ichthyosis Awareness and Management
Time.news Editor: Dr. Hernández, thank you for joining us today to discuss ichthyosis, a rare skin disorder that affects many lives. can you tell us more about the condition and its impact on quality of life?
Dr. Ángela Hernández Martín: Certainly! Ichthyosis is a genetic skin disorder that affects about 1 in 250,000 births. It primarily manifests as severe dryness, scaling, and redness of the skin, which can lead to significant discomfort, mobility challenges, and a host of emotional difficulties, including low self-esteem and social isolation. In Spain alone, approximately 300 individuals are diagnosed with this condition. Ichthyosis can also affect internal organs and has over 150 identified genetic variations, each presenting diffrent challenges.
Time.news Editor: That sounds quite complex. How is ichthyosis categorized?
Dr. Hernández Martín: Ichthyosis is primarily categorized into syndromic and non-syndromic types. Syndromic ichthyosis affects multiple organs, which can involve nervous and immune system complications, while non-syndromic forms mainly impact the skin. Complications can include issues with eyesight and hearing,depending on the type and severity.
time.news Editor: Given the complexity and the lack of a cure, what are the current treatment options available for individuals with ichthyosis?
Dr. Hernández Martín: Currently, there is no cure for ichthyosis. Treatment focuses on relieving symptoms and maximizing quality of life.This is typically achieved through daily skin care routines involving moisturizers, long baths, and sometimes oral retinoids. Unfortunately, the specialized skincare products that many patients require are often quite expensive and, regrettably, not covered by social security systems. This economic strain can further exacerbate the social isolation many individuals feel.
Time.news Editor: that aligns with findings from a recent survey showing that over 61% of ichthyosis patients in Europe are women facing emotional challenges.What can be done to support these individuals better?
Dr. Hernández Martín: Awareness and understanding of ichthyosis are critical. educational initiatives can help reduce stigma and foster a more inclusive community. José María Soria de Francisco,president of the Spanish Ichthyosis Association (ASIC),emphasizes the need for public awareness to improve patient quality of life. Support networks can also provide invaluable emotional assistance to those affected.
Time.news Editor: In terms of public perception, a recent study indicated that 82% of Spaniards view ichthyosis as a disability that impacts physical activity. How can we shift this perception?
Dr. Hernández Martín: It’s essential to encourage open dialogues about the condition. By sharing real stories and experiences of those with ichthyosis, we can definitely help demystify the condition and highlight people’s abilities rather than their limitations. community engagement and partnerships with organizations like ASIC will play an significant role in fostering a supportive surroundings.
Time.news editor: what practical advice would you give to those managing ichthyosis or their caregivers?
Dr. Hernández Martín: Consistent daily skincare is crucial in managing symptoms. Establishing a routine that includes moisturizing and gentle cleansing can make a significant difference. Additionally, connecting with support groups can provide emotional support and share strategies for coping with the challenges of living with ichthyosis. Education is also vital, as understanding the condition can help both patients and caregivers navigate the complexities of treatment and care.
Time.news Editor: Thank you, Dr. Hernández, for your insightful perspectives on ichthyosis. We hope to raise awareness and improve the quality of life for those affected by this condition.