“Living with a Rare Disease: The Nightmare of Scarring Skin”
A 28-year-old man named Murat Ötünç from the Kızıltepe district has been living with a rare genetic disorder known as Epidermolysis Bullosa (EB) since his birth. EB, also referred to as “Snow White” by locals, causes blisters and wounds on the skin due to the bursting of bubbles in the body. As a result, Ötünç can’t go out or make friends since he’s in constant pain. His skin wounds are so severe that he can’t even take a proper bath, which makes his daily life a nightmare.
Ötünç says that his disease is congenital, and it’s a challenge to lie down since blood oozes out of the blisters. Despite the pain and discomfort, he still tries to maintain a routine of taking a shower, changing into clean clothes, and seeing the stain on his skin again.
Epidermolysis Bullosa is a rare disease that affects around 20 infants in every million births. It’s a genetic disorder that makes the skin unnaturally fragile and prone to blistering, causing excruciating pain with even the slightest touch. There’s no known cure for the disease, but a child’s quality of life can be improved with appropriate management.
The importance of raising awareness of rare diseases such as Epidermolysis Bullosa cannot be overemphasized. People living with rare diseases face numerous challenges, not only in the management of their health but also in their daily lives. There’s a need for more research and funding towards finding a cure for rare diseases, and healthcare services should offer better support to patients and their families.
Murat Ötünç’s story is a reminder of the need to support people living with rare diseases and to encourage more research towards finding a cure. Our hearts go out to him and others living with EB, and we hope that they will receive the care, support, and resources they deserve.
