Epidermolysis bullosa, also known as “butterfly disease,” is a rare genetic disorder that affects around 1 in 50,000 children, regardless of gender or ethnicity. This condition causes the skin to be extremely fragile and easily blistered in response to friction.
There are approximately 30 subtypes of butterfly disease, classified into four main groups based on the specific part of the skin that is affected. The most common form, epidermolysis bullosa simplex (EBS), accounts for 70% of cases and is typically inherited in an autosomal dominant pattern. This means that a child only needs to inherit one copy of the mutant gene from a parent to develop the disorder.
Symptoms of butterfly disease usually appear at birth or in early childhood and can range from mild to severe. Common signs include easily blistered skin, especially on the hands and feet, as well as thickened and scarred areas. While mild forms of the disease may improve with age, severe cases can lead to life-threatening infections and organ damage, limiting life expectancy to around 30 years.
Unfortunately, there is currently no cure for butterfly disease. Treatment focuses on managing symptoms through proper wound care, pain relief medications, and antibiotics to prevent infections. In 2023, the FDA approved a new gene therapy gel called Vyjuvek for a specific subtype of butterfly disease, dystrophic epidermolysis bullosa, which helps deliver working copies of the collagen gene to affected cells.
Additionally, another gel called Filsuvez, made from birch bark, was approved for the treatment of wounds in patients with butterfly disease. This advancement in treatment options offers hope for those living with this debilitating condition.
It is important to note that this article is for informational purposes only and should not be used as medical advice. If you have any questions about butterfly disease or other health-related topics, feel free to reach out to us at community@livescience.com. Stay informed and take care of your health.
