THEY baffle even the finest specialists: rare diseases that affect only a handful of individuals and that are often caused by extremely rare genetic mutations.
Euan was declared healthy when he was born in August 2008 at the West Visayas Southern University Medical Center in Iloilo City.
But right after he was transferred to the nursery, blisters on skin suddenly appeared.
Worried that it might be an infectious case, Euan was immediately transferred to a private room and placed under isolation.
However, even after infusion of various medicines, undergoing several wound test and blood culture, use of different antibiotics (one was only used as a last recourse for adults with severe viral infection), the blisters and wound kept on appearing and some even getting worse.
Sadly, even after being confined for two months, the doctors decided to just discharge Euan without clear explanation and diagnosis of his condition.
“With no choice but to take care of his blisters and open wounds, my husband and I took the initiative to ask around and look for another doctor,” recalls mother Sharon.
It was only in 2011, when the couple was recommended to a dermatologist at the Iloilo Mission Hospital.
After taking skin samples for biopsy, the doctor, after a month, came with a new diagnosis: Epidermolysis Bullosa or Butterfly syndrome.
Butterfly syndrome is a genetic illness in which, because of missing a vital “glue” that holds it together, the skin blisters peels off at the slightest brush or knock.
It leaves sufferers such as Euan covered in red raw wounds and huge blisters.
Sadly, there is currently no cure so Euan’s condition and the few options he has involve relieving the symptoms and preventing complications from developing, especially infection.
Like other individuals with this condition, Euan also needs to a gastro intestinal tube because of difficulty swallowing, which is a painful endeavor.
“We only have one more wish and that for one day, a cure could be developed so that children, like our Euan, will be able to fully enjoy their life,” hopes Sharon.
