A patient with "Tree Man" syndrome says he "can finally live a normal life"

More than two years after doctors in Jerusalem had removed thousands of bark-like lesions that prevented Mahmoud Taluli from using his hands for more than ten years, he continues his fight against a rare and incurable skin disease. But even with another operation scheduled later this summer – his fifth in the innovative treatment at the Hadassah Medical Center – Taluli sees himself as a winner.

"After years of suffering and loneliness, I can finally lead a normal life," said Taluli, 44, living in Gaza and suffering from verruciform epidermodysplasia, an extremely rare disease caused by the inability to his immune system to fight the human papillomavirus, causing painful gray and white growths on his hands and other parts of his body. Its severe form of this disease has been documented only very few times in the world and has been dubbed the "tree man" syndrome because large growths may resemble tree bark.

Last month, in Bangladesh, a man with the same disease made headlines by inviting doctors to amputate their hands after a series of unsuccessful surgeries to remove his injuries. As in the case of Taluli, the lesions on the Bangladeshi patient continue to grow back, leaving him very sore and unable to use his hands, according to media reports.

Although he did not talk to this patient or his doctors, Michael Chernofsky, senior and microvascular surgeon at Hadassah who oversees the treatment of Taluli, said the amputation was not a good solution. In fact, when Taluli arrived for treatment at Hadassah in 2017, he said doctors in Egypt and Jordan had recommended the amputation of his hands – an option Taluli had refused.

"The amputation is a non-beginner who would create more problems," said Chernofsky, explaining that if the patient had his hands cut off, he would likely continue to suffer sharp pains caused by severed nerves during the process. # 39; amputation. And the condition of the skin would continue to affect the rest of the patient's body, he said.

"But I feel really bad for this patient in Bangladesh and it seems that his desire for amputation is a sign of his level of frustration," he said.

Treating Taluli and finally saving his hands was a long process – and it's not over yet. In four operations since 2017, doctors have removed thousands of lesions from his hands and other parts of his body. With the aid of scalpels and other instruments, they make incisions deep enough to require a skin graft to promote healing. Operations have been largely successful in eliminating enough growth to allow Taluli to use his hands, but new growth continues to emerge. The team will perform a fifth operation later this summer to remove new lesions from different areas of the body, as well as scar tissue from previous operations.

"We realized that he was re-infected by touching lesions and then touching other parts of his body," Chernofsky said. Not only can existing lesions spread to other parts of her body, but if the deep roots of each lesion are not completely eliminated, growth resumes, Chernofsky added.

"You can not shave them to the surface," said Chernofsky. "You have to remove every last flap." Removing the roots of the lesions also relieves the pain caused by nerve compression.

"At first I was not sure that our approach would work," said Chernofsky, explaining that there was no medical protocol for treating this disease. "We did not know if he would have anything viable left, but thank goodness, it works."

Doctors are now working on Taluli's genome mapping to identify the genetic abnormality that prevents its immune system from fighting HPV, which comes in under a hundred strains and which can cause warts and even some types of cancer, but is usually safe. Taluli does not have the same genetic mutation as most other patients with the disease, doctors said.

Ideally, Hadassah's doctors will develop a tailor-made type of immunotherapy for Taluli to help her body fight HPV better. They also hope to learn about the ever-mysterious human papillomavirus virus and why it affects different people in different ways.

Another challenge is that Taluli lives in Gaza, where the struggling medical system does not offer physical therapy that would ensure a better future functioning of his hands. Patients in the increasingly isolated and impoverished enclave must also obtain permission from Palestinian and Israeli officials to enter Israel for treatment. Taluli's case has been approved so far and he is grateful for the treatment.

"The surgery completely changed my life," he said in response to questions sent by email. "I can play with my children, I can go to family events, I do not need to cover my hands when I go out in public."

Sara Toth Stub is a journalist based in Jerusalem. You can follow his work on Twitter: @saratothstub.

Correction: July 8, 2019 12:00 – A legend of the previous picture wrongly indicating the name of Mahmoud Taluli under the name of Muhammad.

Copyright NPR 2019.