amputation, dermatologists, Dr. Chernofsky, Dr. Luria, Gaza, hadassah, Hadassah Medical Centre, HPV, Human Papillomavirus, Jerusalem, lesions, medical advice, operations, rare disease, skin condition, surgeon, Surgery, treatment, tumours, virus, warts
Even the experienced hand surgeons at Hadassah Hospital Ein Kerem had never seen such a shocking development: their patient’s hands, with encrusted, wood-like growths, looked as if they had metamorphosed into trees.
Hadassah Senior Hand and Microvascular Surgeon Dr. Michael Chernofsky first met 42-year-old Mohammed Taluli from Gaza when Mr. Taluli came in to his clinic, desperate for medical advice. His condition had defied all treatment.
“This is a very rare disease, which has no documentation in the medical books,” explains Dr. Chernofsky. “A patient who has had many complex tumours covering his hands for more than 10 years, he’s suffered from terrible pain, the inability to use his hands, and shame. The disease is also very dangerous and can develop into cancer.”
Sometimes called “wooden man” or “tree-man condition,” the disease is a complication of HPV, Human Papillomavirus–the same virus that causes common warts. “Most people,” says Dr. Chernofsky, “have an immune system that can cope with the virus or be supported by drugs. In Mr. Taluli’s case, his body’s immune system couldn’t cope and the virus developed in an uncontrollable manner.”
The decision to operate was made in consultation with colleague Dr. Shai Luria, also a Hadassah hand surgeon. “We had to come up with a procedure to reduce the possibility of tumours growing out of control again,” reports Dr. Luria. “It was also important to work with a team of dermatologists and the operating room staff to ensure that we wouldn’t be infected by this highly contagious disease.” Dr. Luria adds: “We worked with double shielding and special masks, and we didn’t scorch the tumours because this would spread infectious smoke.”
The surgical removal of the growths was combined with skin grafts, medication, and a special vaccine administered by Dermatologist Dr. Vered Molho-Pessach. Further treatment will continue, including occupational therapy, so that Mr. Taluli can regain the use of his hands.
A father of six, Mr. Taluli recalls his 10-year-struggle to find a cure. “We tried to find treatment in Egypt,” he says, “but there was nothing to do there.” He then tried his luck both in Nablus and in East Jerusalem’s Makassed Hospital, with no success. “They sent me to Hadassah,” he says. ”After years in which I sat at home, unable to work because of my limitations and afraid of getting cancer, the experts here at Hadassah were the only ones who gave me hope for recovery. The treatment here is excellent. I very much hope that my previous life is already behind me.”
Update: July 8, 2019
More than two years after doctors in Jerusalem removed thousands of bark-like 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 Centre — 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 grey 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. “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.
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.
“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 G-d 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 and why it affects different people in different ways.
“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.”