Patient With 'Tree Man' Syndrome Says He 'Can Finally Live A Normal Life'
More than two years after doctors in Jerusalem removed thousands of barklike lesions that had prevented Mahmoud Taluli from using his hands for more than a decade, he continues his battle with a rare, incurable skin condition. But even with another surgery planned for later this summer — his fifth in the pioneering treatment at Hadassah Medical Center — Taluli considers himself a winner.
"After years of suffering and solitude, I can finally live a normal life," said Taluli, 44, who lives in Gaza and suffers from epidermodysplasia verruciformis, an extremely rare condition caused by his immune system's inability to fight off the ubiquitous human papillomavirus, resulting in painful gray and white growths on his hands and other parts of his body. His severe form of this condition has been documented only a handful of times around the world and has been nicknamed "tree man" syndrome because the large growths can resemble tree bark.
Last month, a man in Bangladesh with a similar condition made international headlines with his pleas for doctors to amputate his hands after a series of unsuccessful surgeries to remove his lesions. As in Taluli's case, the lesions on the Bangladeshi patient keep growing back, leaving him in severe pain and unable to use his hands, according to media reports.
Although he has not spoken with that patient or his doctors, Michael Chernofsky, the senior hand and microvascular surgeon at Hadassah who is overseeing Taluli's treatment, says that amputation is not a good solution. In fact, when Taluli first arrived for treatment at Hadassah in 2017, he said that doctors in Egypt and Jordan had recommended amputation of his hands — an option Taluli refused.
"Amputation is a nonstarter that would create more problems," Chernofsky said, explaining that if the patient's hands were cut off, the patient would likely continue to have severe pain from nerves severed in the amputation process. And the skin condition would continue to affect the rest of a patient's body, he said.
"But I really feel bad for this patient in Bangladesh, and it seems like his desire for amputation is an index of his frustration levels," he said.
Treating Taluli, and ultimately saving his hands, has been a long process — and it isn't over yet. In four operations since 2017, doctors have removed thousands of lesions from his hands and other parts of his body. Using scalpels and other instruments, they make incisions that are often deep enough to require skin grafts to aid in healing. The operations have been largely successful in clearing away enough growths to allow Taluli to use his hands, but new growths continue to appear. The team will operate for a fifth time later this summer to remove new lesions on various areas of his body as well as some scar tissue from previous operations.
"We realized he was just reinfecting himself by touching lesions, then touching other parts of his body," Chernofsky said. Not only are existing lesions at risk of spreading to other areas of his body, but if the deep roots of each lesion are not completely removed, the growth returns, Chernofsky said.
"You can't just shave these off at the surface," Chernofsky said. "You have to remove every last shred." Removing the roots of the lesions also relieves the pain they cause as they compress nerves.
"In the beginning, I wasn't sure our approach would work," Chernofsky said, explaining there is no medical protocol for treating the condition. "We didn't know if there would be anything viable left of his hands, but thank God it's working."
Doctors are now working to map Taluli's genome to pinpoint the genetic abnormality that keeps his immune system from fighting off HPV, which comes in more than a hundred strains and can cause warts and even some types of cancer but is usually harmless. Taluli does not have the same genetic mutation that most other patients with the condition have, doctors said.
Ideally, the Hadassah doctors will develop some type of tailored immunological-based treatment for Taluli to allow his body to better fight HPV. They also hope to learn more about the still mysterious human papillomavirus virus and why it affects different people in different ways.
Another challenge is that Taluli lives in Gaza, where the ailing medical system does not offer physical therapy that would ensure better future function for his hands. Patients from the increasingly isolated and impoverished enclave also must obtain permission from Palestinian and Israeli officials to enter Israel for care. Taluli's case has been approved so far, and he is thankful for the treatment.
"The surgery has completely changed my life," he said in response to questions submitted by email. "I can play with my children. I can go to family events. I no longer need to cover my hands when I go out in public."
Sara Toth Stub is a Jerusalem-based journalist. You can follow her work on Twitter:@saratothstub.
Copyright 2021 NPR. To see more, visit https://www.npr.org.