Vietnam to treat foreign patient with rare disease

The National Hospital of Pediatrics in Hanoi is currently considering the medical treatment of a 10-month old Romanian baby who has been diagnosed with ‘epidermolysis bullosa’, a rare skin disease, according to the director of the hospital, Dr Nguyen Thanh Lien.

Late last month, a Romanian citizen named Gabriel Bontas, wrote to the National Hospital asking for permission to bring his son, 10-month-old Emanual Bontas to Vietnam for treatment of a rare skin disease.

The father believes that Vietnam is the second country in the world, apart from the US, that can successfully treat this ailment.

If approved by the Ministry of Health, this will be the first case of a foreign patient coming to Vietnam for treatment of this rare disease.

However, Dr. Lien said epidermolysis bullosa is a rare inherited connective tissue disease that causes blisters on the skin and mucosal membrane, forming small dots on the skin that makes the skin vulnerable to mould, causing much pain. The patients’ skin becomes extremely fragile as minor mechanical friction or trauma can separate the layers of the skin and form blisters.

Up until now, the scientists have not found any treatment for this ailment and most patients do not live beyond the age of 40.

Dr. Lien believes that it is possible to cure the baby by transplanting stem cells. In 2011, the National Hospital of Pediatrics successfully used stem cell transplant to carry out surgery on two babies, and another Vietnamese infant patient with the same ailment. 

With this medical success, Vietnam has become the second country in the world after the US to successfully treat the rare disease.

But Dr Lien also said that in the case of the Romanian patient he has no siblings, and hence no source of stem cells for transplant.  The hospital thus advised his family to give birth to another baby to collect cells from the umbilical cord for treatment or contact an umbilical cord blood stem cell bank in Europe for transplant purposes.

In Vietnam, the treatment cost for ‘epidermolysis bullosa’ is around US$40,000, and may cost millions of dollars in the US.

Source SGGP Translated by Dan

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