Man shares SJS struggle on YouTube video

Rev. Samuel Irwan Santoso of Indonesia speaks with a heavy accent, but the meaning of his words are clear – he has no tears. “I have no tears for five years,” he says on his YouTube video. “You must be happy because you have tears. You can cry.”

In January 1998, Santoso came down with a fever and sore eyes. He went to two different doctors and received medication for his condition, but he became increasingly sicker. “Suddenly all my skin blistered. My eyes became blind,” he says as disturbing photos of him flash on the video. Santoso was admitted to the hospital and diagnosed with Stevens Johnson Syndrome (SJS).

SJS is a rare but life-threatening condition that usually occurs from a reaction to common medications, such as antibiotics, ibuprofen or anti-seizure drugs. SJS often begins with a rash that becomes blistered and peels away. It affects the skin and mucous membranes, causing blisters to form in the mouth and eyes. The most severe form of SJS is toxic epidermal necrolysis (TEN).

During his battle with SJS, Santoso says he “humbled myself to God.” He vowed to serve God if he would healed. Three weeks later, Santoso was able to leave the hospital. Keeping his promise, Santoso became a reverend.

But Santoso still suffers from the ill effects of the disease he had a decade ago. “My eyes are very disabled,” he says. “I live with blur eyes.” He says he needs to put “tears” in his eyes every five minutes. He goes through a bottle of eye drops a day.

Yet, he is happy to be alive. “I am thankful to the Lord because he has given the healing to me,” he says. “And I hope my testimony can help you.”