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Rare Skin Disease Ruined Gaza Man's Life — Until Israeli Doctors Stepped In (Photo)

D

Dalek

Member
Rare Skin Disease Ruined Gaza Man's Life — Until Israeli Doctors Stepped In

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Muhammad Taluli arrived from Gaza at Jerusalem's Hadassah Medical Center a few months ago and unwrapped the cloth from his hands to reveal gray and white growths that looked like tree bark. The doctors had never seen anything like it.

In fact, there have been only a handful of such extreme cases of this rare condition — called epidermodysplasia verruciformis — documented in medical literature around the world, says Dr. Michael Chernofsky, senior hand and microvascular surgeon at Hadassah, who is overseeing the man's treatment.

"I've seen some weird things, but not this," Chernofsky says.

The culprit behind epidermodysplasia verruciformis is the human papillomavirus, which comes in more than 100 different strains, combined with one of many different genetic mutations that limit the body's ability to fight off the virus. When the immune system cannot deal with HPV, the virus can take over the skin, causing the lesions, Chernofsky explains.
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After a few well-publicized cases in Bangladesh and Romania, the condition was nicknamed "tree man" disease in the media because the tumors often resemble wood or bark.

In most cases of epidermodysplasia verruciformis, which total about 600 a year worldwide, the patient develops many flat warts rather than large wood-like tumors, says Jerome Garden, a professor at Northwestern University's Feinberg School of Medicine. Even if left alone, the warts do not progress into large tumors like Taluli's, he says.

Taluli's doctors and other rare skin disease experts emphasize that there haven't been enough properly documented cases to say with any certainty how earlier intervention would affect the condition. If a patient like Taluli sought medical care earlier, the growths could have been removed before they got so large, but they would likely still resemble bark rather than ordinary warts and likely keep returning.

"It's a complex interplay between the specific virus and your immune system," explains Dr. Daniel Finn, a dermatologic surgeon in Boston, who has seen a few cases of less aggressive forms of the disease. "It's not well-worked out who develops such an aggressive disease."

"Certain people with this condition are prone to developing a more extreme presentation," Garden adds.

When that happens, doctors are not sure what to do.

"There are no guidelines for treatment because it is so rare," Chernofsky says. But that didn't stop his team from trying.

Taluli, 42 and a father of six, hadn't been able to use his hands for 10 years and was in severe pain.

"This was ruining his life," Chernofsky says. Doctors in Jordan and Egypt had recommended amputation, and doctors at Palestinian hospitals in the West Bank told him there was no effective treatment.

"There was nothing to do," Taluli said in a statement released by Hadassah. Eventually, Palestinian and Israeli officials arranged for him to seek treatment at the medical center.

"Yes, it's a difficult case, but we thought that there is something you can do about it, " says Dr. Shai Luria, an orthopedic and hand surgeon at Hadassah. In late August, surgeons removed most of the growths, freeing the man's palms and fingers for the first time in years, Chernofsky says. The medical team also grafted healthy skin, taken from other areas of Taluli's body, onto his hands.

Due to the rare nature of the disorder, there was no protocol for the surgery, the doctors say. But for Taluli it was his only hope.

Now his hands appear as if they have been burned — discolored and rough-textured — rather than covered with lesions. That does not trouble Taluli.

"After years of sitting at home, ashamed and not being able to work, the surgeons here at Hadassah have given me hope," Taluli said in his statement, which was released shortly after the surgery. "I hope my former life is already behind me."

Earlier this week, Taluli returned home to Gaza with a supply of medications — which the Israeli doctors paid for personally — to prevent the growths from returning. The medications include topical creams used to treat warts caused by HPV.

"But probably the growths will come back, although hopefully they will come back more slowly," Luria says. "He will probably need more surgeries."

Not only are they unsure of Taluli's prognosis, but they don't know if similar surgery and treatment would work on other severe cases of epidermodysplasia verruciformis. In the few cases reported in the media over the years, none has had the same form of HPV or same underlying genetic mutation as Taluli.
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Alebrije

Alebrije

Member
Have seen that on Discovery Channel , specially about people from India. As far as I remember there is no cure.
 
PJV3

PJV3

Member
I think I might have considered amputation looking at that, glad they could help him out eventually.
 
J

JonnyDBrit

Member
Alebrije said:
Have seen that on Discovery Channel , specially about people from India. As far as I remember there is no cure.
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You might be thinking of Indonesia, due to the most famous case of this - Dede Koswara, 'Tree Man'.

And yeah, no cure. At best you do a Jorah Mormont, and then wait for the next round. Honestly it just gets to me how our bodies could develop this shit.
 
P

Pakkidis

Member
Such rare conditions are not studied carefully enough given lack of funding and so few cases existing. Breaks my heart to see things like this :(
 
P

Protome

Member
I remember watching a documentary about this condition a while ago. It was heart breaking to see it start to grow back after the guy got surgery and looked normal again.

The guy in that documentaries condition had gotten so bad they needed to readjust the bones in his hand after removing the growths too.
 
P

Plywood

NeoGAF's smiling token!
JonnyDBrit said:
You might be thinking of Indonesia, due to the most famous case of this - Dede Koswara, 'Tree Man'.

And yeah, no cure. At best you do a Jorah Mormont, and then wait for the next round. Honestly it just gets to me how our bodies could develop this shit.
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Ah, was wondering if this was that guy, apparently he died. :(
 
Z

Zee-Row

Banned
I literally yelled "Ahhhhhhhh" at my screen when I saw the pic. I was expecting something like vitiligo or Shingles.
 
S

Slaythe

Member
For the record, you can't really treat this.

It always grows back and the patient runs out of healthy skin to graft :/ .

The hope is for it to grow back slowly enough so that the patient dies before they can't find any work around. ( dies of old age I mean )

There is one case where removing it made it more aggressive too. It's fucking shit. :/
 
M

Maximo

Member
Fuck it just cut my hands off and give me robot ones cause holy fuck! Poor dude espically with the growth just going to come back over the years...
 
J

JonnyDBrit

Member
OfficerRaichu15 said:
I almost threw up holy crap how is that possible????
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Basically, an immune defect causes an otherwise mundane infection of HPV to go into absolute overdrive. Particularly, it encourages warts with high amounts of keratin, resulting in the hard, bark-like growths that gave 'Tree Man' his title (keratin being the same stuff animal horns are often made from).
 
V

VeeP

Member
hateradio said:
HPV is the worst virus. *Shudders*
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It really isn't the "worst" virus. I would imagine 3/5 people who are sexually active have HPV (guesstimate from what I've read). Usually it doesn't result in anything, but depending on the type it can result in different things.

Trust me, other viruses are A LOT worse. Some kill your immune system, others will cause paralysis over time, etc etc.
 
G

Griss

Member
When you see shit like this you really get a good idea of where some of our myths and legends about monsters and demons can start from.
 
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