In Singapore, a rare genetic skin disease that dermatologists can sometimes mistake as eczema has been detected in three new patients, including a newborn baby, so far this year.
Congenital epidermolysis bullosa (EB) is characterised by extremely fragile skin that blisters and tears from friction or trauma. It is estimated that at least 30 families living here have loved ones afflicted with the disease.
"The disease is not easily recognised, even by dermatologists," said Dr Mark Koh, head and consultant of Dermatology Service, KK Women's and Children's Hospital.
Patients in whom the disease shows up later in childhood can have itchy lesions which may be mistaken for eczema, as acute eczema can also involve the formation of blisters, he said.
But EB can be a much more dangerous condition. Those with mild EB may have a few blisters, while others have many on the skin and even inside the body, such as in the mouth. In very severe forms, patients do not live beyond childhood due to infections, said Dr Koh, who is president of a recently formed support group for EB patients called Debra (Dystrophic Epidermolysis Bullosa Research Association) Singapore.
"Patients with moderately severe disease go through life with recurrent painful blisters that can eventually lead to loss of fingers or toes, contractures and even skin cancers."
When staff nurse Nurzeehan Salim gave birth to her son about seven months ago, he was born without skin on certain areas. That was not the main problem though as the skin grew back.
"The problem is the blistering, which can occur on specific parts of his body, such as his face or limbs," said the 25-year-old mother.
"I need to break the blisters to drain the fluid and then take care of the blistered skin."
Clothing can cause the blisters, so she has to make sure she does not dress him in coarse materials. Diapers also have to be soft. "When you carry him like a normal baby, and you accidentally rub against a part of his arm, the skin will tear."
The baby has a relatively severe form of EB. "If the skin is not properly managed, he could have problems like sepsis (bacteria in the blood), anaemia (low red blood cells), poor growth, scarring and deformities," said Dr Koh. As he grows older, and if the condition is not properly managed, he could face psychological and social problems.
Like eczema, EB has no cure and treatment centres on managing the symptoms. The standard options are daily wound care, pain management and protective bandaging.
Dr Koh said many EB patients require lifelong non-adherent dressings, which can be very expensive.
Ms Nurzeehan herself spends as much as $500 on wound products in a month. "The problem is we cannot use Medisave to pay for it. I really hope the Government can help EB parents like us," she said.
A 50-year-old man here, who has a mild form of EB, said he is not able to play any sport that needs any footwork. He cannot play golf, jog, run or go for a long stroll.
"Walking outdoors for even 15 minutes on a sunny day will result in blisters. Blistering of the skin on the soles of my feet renders me immobile till the blisters heal."
The blisters are painful, he said.
The man, who declined to be named, said he does not tell others about his condition. "When I have blisters and a noticeable limp, I will just say that I have hurt my foot."
His daughter, who is in her mid- teens, has inherited EB. "She copes with a bravery which humbles me. Her life exposes her to walking in hot schoolyards and hallways, during hot afternoons. This causes her to have blisters almost all the time."
Dr Koh said teachers need to know about the condition and how to help an EB child prevent blisters.
For instance, an air-conditioned classroom alleviates the heat and sweating that makes blistering worse, or extra time might be needed during exams as children may develop blisters when they write too fast, he said.
Debra Singapore is organising public outreach events this week, held every last week of October. About 14 families with at least one EB sufferer are currently members.
This article was first published on October 27, 2015.
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