A baby boy with eight toes on each foot was discharged from a hospital in Leizhou, southeast Guangdong province on November 5, 2008. The baby has five fingers on each hand but doesn’t have thumbs. Doctors said this might have something to do with genetics or environment pollution.

Source: ChinaDaily Link Filed under Weird Diseases

Photo: Bancroft Media

Twinkle Dwivedi, 13, has a strange disorder which means she loses blood through her skin without being cut or scratched.

She has even undergone transfusions after pints of it seeped through her eyes, nose, hairline, neck and the soles of her feet.

Sometimes her condition is so bad she wakes up with her entire body covered in dried blood.

Villagers near her home in Uttar Pradesh, India, believe she must be cursed and shout cruel things in the street.

Her frantic family have sought help from numerous doctors as well as preachers from many different religions without success.

“I am desperate to help my daughter,” said her mother Nandani Diwedi, 42.

“We are not superstitious people but we became so desperate.

“We’ve been to temples, mosques, churches and sufi saints, but nothing has cured her.”

Indian medics now believe her condition is an extreme version of a rare blood platelet disorder for which they cannot find a cure.

However, a ray of hope has been offered by a British specialist, who believes Twinkle may have a different clotting disorder, for which treatment will be possible.

Last year, Twinkle was a normal 12-year-old who enjoyed school, painting and playing with her friends – but then she suddenly started bleeding between five and 20 times a day.

“I was so scared,” she said.

“It didn’t hurt. But it was scary and messy, and my friends thought it was disgusting.

“My school blouse went all red. No-one would come near me or play with me.

“I used to cry nearly every time it happened. But now I just keep quiet.”

Twinkle was thrown out of one school and another refused to teach her because of her strange condition.

Now she studies at home and rarely sees other children.

Her mother said: “I am very worried about her. She is very weak and pale from the blood loss.

“She is very isolated and depressed. She wants to get better so she can go back to school.

“I now believe doctors in India are incompetent. I don’t think they can help her.”

The first time the bleeding happened from Twinkle’s mouth in July 2007, her parents took her to a GP who suggested a common ulcer.

But then, a few weeks later, the bleeding also started from her nose, eyes, feet and hairline.

Twinkle’s parents took her to see dozens of different doctors who could not find a reason for her blood loss.

Her dad Aditya Kumar Diewdi, 47, a railway worker, said: “They told us they had never seen a case like this before.

“One doctor even accused us of making it up. Why on earth would we do that?”

Finally doctors at the All India Institute of Medical Sciences in Delhi decided she has Type 2 Platelet Disorder, a rare condition where blood is dangerously low in clotting particles.

They say her blood is watery and has the colour of a light red wine – but they cannot find a treatment to make it thicker.

However, a blood specialist in Britain came up with a different diagnosis and believes there may be hope.

Consultant haematologist Dr Drew Provan, of Barts Hospital in London, said:

“She may have Type II von Willebrand disease and she should see a coagulation doctor for treatment.”

He believes her condition is not related to the number of clotting particles, but something called the von Willebrand factor, which helps platelets stick to blood vessels and blood to clot.

But Twinkle’s family is poor and unless an actual diagnosis can be found soon, she will continue growing weaker.

She has already undergone several blood transfusions and it is feared she may one day lose too much blood too quickly.

“When I bleed from the head, my head feels very heavy,” says Twinkle.

“When my eyes bleed they go really red and sore. It also hurts when I wash it after bleeding.”

Twinkle has thee older sisters who are also extremely concerned for her future.

Her eldest sister Parul, 21, who works in a Delhi call centre said: “We pray every day that the doctors will find a cure for my sister.”

Her mum added: “My family will do anything we can to help her be healthy again.”

Source: Telegraph Link  filed under Weird Diseases

Melbourne, Australia – A woman whose eyes clamp shut for three days at a time – then open up for the next three – has baffled specialists.

Natalie Adler, 21, has been locked in the extraordinary routine for four years.

Doctors believe Ms Adler may be the only person in the world with her condition.

“My eyes are closed for three days and then open for three days,” Ms Adler, of Caulfield South, said.

“Something happens overnight (on the third night). I go to bed and I can open my eyes, and then when I wake up the next day I can’t.

“Nobody knows why.”

Ms Adler has undergone hundreds of tests since her life dramatically changed in year 11 high school.

“I woke one Sunday and my eyes were swollen. It was the day before an English exam,” she said.

After a sinus and staph infection “I just never got better”.

“My eyes started closing intermittently, really randomly, but within a few weeks they were closing for three days,” she said.

Experts from the Royal Eye and Ear Hospital said Ms Adler’s case was like no known other.

Associate professor Justin O’Day, head of the hospital’s neuro-ophthalmology unit, said: “Natalie’s a mystery.

“She’s a one-off and we don’t have a diagnosis.”

Dr O’Day said a condition called blepharospasm – random muscle spasms forcing the eyes closed – offered some point of reference.

But he said there was no medical explanation for the strict consistency of Ms Adler’s eye routine. He added: “It’s unusual to see somebody with this degree of spasming and eyelid closure, especially at this age.

“There is no known cause.”

The best-known treatment, Botox injections around the eyes, worked temporarily for Ms Adler.

For almost two years, her six-day eye cycle inexplicably changed to five-days open, one-day closed.

But Ms Adler, who also suffers unexplained fatigue and nausea, said Botox no longer worked for her.

During “closed-eye days”, Ms Adler’s eyes are completely shut, except for a small slit in her left eye.

On “open-eye days”, they function normally, though the left eyelid can droop.

Ms Adler crams as much as she can into good days, which are marked months ahead in her diary. But some things can’t be scheduled.

“On my 18th birthday, my eyes were closed, but on my 21st they were open, so I had a party,” she said.

A big football fan, she watched the AFL Grand Final live for the first time in three years.

“Not being able to go to the football or seeing my friends as much is what I miss the most,” Ms Adler said. “It’s the general day-to-day things that I used to take for granted.”

Ms Adler’s parents, Fred and Lillian, said they were proud of the way their daughter handled her lot.

“Natalie’s always saying there are a lot of other people worse off than she is,” Mr Adler said.

Natalie’s next treatment will include electrical stimulation of the eyes, has not given up hope of a cure.

“The tests give me a glimmer of hope.”

.

Source: news.com.au Link filed under Weird Diseases

One of the few things Mandy Sellars wanted out of life was something many people tried to avoid.

“In life, a lot of people don’t like to be labeled as this or that or the other,” Sellars said. “But all my life, I’ve been kind of searching for a label for myself.”

The label, she thought, would be the answer to a mystery that her doctors had not been able to solve. “There’s been hardly any contact with doctors,” she said. “I’ve been kind of, in my own words, put on the shelf and kind of forgotten about.”

Sellars is 33 years old and weighs 285 pounds. Her upper torso is a petite size 8 and accounts for only about 70 or 80 pounds of her weight. The rest is in her legs and feet.

“When I was born, there was a noticeable difference between my upper body and my lower body,” Sellars said. “They didn’t actually expect me to live further than about a few, a few days or so.”

A Tough Job for the Shoemaker

Throughout her childhood, the growth of her legs continued to outpace the rest of her body until she could no longer move on her own. She walks now with the aid of crutches and drives a specially equipped automobile.

Near her home in northwestern England, Sellars goes to a private shoemaker. Her right foot is 16 inches long and 7 inches wide, and her legs are of differing lengths because the left foot — a club foot, 11 inches long — faces backward.

So the fittings are delicate. It takes weeks of trial and error to produce the final molds for a pair of boots, and they will cost around $4,000 — money she has to raise because she is unemployed.

The public’s reaction to her has sometimes been brutal. She recalled being heckled once by a gang of youths.

“Just walking through the park with a friend, that’s all. And, there must’ve been three, four, five, teenagers on bikes, or something,” she said. “And they just started making the usual kind of comments, you know, ‘Oh, my God, look at that.’ You know, ‘Isn’t that disgusting?’ And just kind of circling myself and my friend on their bikes. Something like that is very intimidating.”

Because her condition remained such a mystery, she often seemed to be on the edge of disaster. In college, she was once suddenly paralyzed because of a blood clot that required 10 weeks of hospitalization. When a plastic surgeon tried liposuction to reduce the bulk in her legs, more tissue grew back than had been removed.

“In my mind, the condition has a mind of its own,” Sellars said, “because whatever you take away grows back bigger and bigger.”

Finding Help Online

It was through the Internet that she finally began to get a clue about what her condition might be. A friend of hers came across the site of an organization in Great Britain called the Proteus Syndrome Foundation U.K.. That finally led to a diagnosis, one that Sellars had been waiting years to receive. The unusual growth of her legs and knees was common to people with Proteus syndrome

“This is a very rare disorder. Certainly, less than one in a million,” said Dr. John Graham, director of clinical genetics at Cedars-Sinai Medical Center in Los Angeles. “Proteus syndrome is named for the Greek God who could change his form. And because it was such an apt description of how these individuals rapidly change form from appearing relatively normal as young children to this startling overgrowth, the name has remained with the disorder ever since then.”

The most famous case of Proteus syndrome in history was that of Joseph Merrick, also known as the Elephant Man, who died in 1890 and was the subject of a well-known movie about his life.

Merrick’s condition affected his head and facial features as well as his arms and legs. Different patients may be affected in different areas. Doctors can’t say what an average lifespan might be. The syndrome is poorly understood, but it is not believed to be hereditary.

Thinking Ahead
Sellars lives independently in a home that has been only slightly modified for her, but even common household tasks — fixing a cup of tea — can be exhausting. She visits a nutritionist, hoping she can lessen the effects of Proteus syndrome through diet, but so far, it hasn’t helped.

She has been told that eventually she may need to amputate her legs. She’s already considering how she will live her life then and has even thought about entering the London Marathon as a wheelchair racer.

“I’d love to do that,” Sellars said, “and hopefully then be able to wheel myself and train hard enough to be able to do that, and raise money for charity that’s helped me.”

Source: ABCNews link  filed under Weird Diseases

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The world’s hairiest man is using an online dating agency to meet ladies after breaking up with his girlfriend of three years.

An Indonesian fisherman who is half man half tree has been offered new hope of recovery by an American doctor and Vitamin A.

Thirty-two-year-old Dede, who lives in a remote village in Indonesia with his two children, feared that he would be killed by the tree-like growths that cover his body.    

Known locally as ‘Tree Man’ his condition has baffled local doctors for 20 years. He has root like structures growing out of his body – branches that can grow up to 5cm a year and which
protrude from his hands and feet, and welts covering his whole body.

In an attempt to earn a living to support his family, he is part of a circus troupe, displaying his Tree Man limbs along with others afflicted with skin deformities in ‘freak’ shows. The former fisherman was the subject of a documentary “Half Man Half Tree”, part of the “My Shocking Story” series on Discovery Channel TV.

Dede’s story began when wart-like “roots” started growing out of his arms and feet after he cut his knee in a teenage accident. The medical world was completely baffled. The welts spread rapidly across his body and soon he was not able to carry out ordinary household tasks.

Dede was sacked from his job and deserted by his wife. He has been raising two children, now in their late teens, in poverty. He is resigned to the fact that local doctors have no cure for his condition.

While he has the support of his extended family, he has frequently been a target of ridicule and abuse in rural fishing village where he lives. But now new hope has emerged for Dede after an American dermatology expert flew out to his home village south of the capital Jakarta.

Dr. Anthony Gaspari of the University of Maryland claims to have identified Dede’s condition, and has proposed a treatment that could completely change his life.  Following the testing of samples of the
lesions and Dede’s blood, Dr. Gaspari says his condition is caused by the Human Papilloma Virus (HPV). This is a fairly common infection that usually causes small warts to develop on sufferers.

Dede’s problem is that he has a rare genetic fault that impedes his immune system. This means his body is unable to contain the warts. According to Dr. Gaspari, the virus was able to “hijack the cellular machinery of his skin cells”, instructing them to produce huge amounts of the substance that caused the tree-like growths known as “cutaneous horns” on both his hands and feet. The doctor became involved in the case through the Discovery Channel documentary, and he is convinced that Dede’s condition can be largely cleared up by a daily doses of a synthetic form of Vitamin A, which has been demonstrated to stop the growth of warts in severe cases of HPV.

 Dr. Gaspari said that Dede’s warts should reduce in size to the point where he can use his hands. He said he had never seen anything like this in his entire career.

Source: Discovery Channel. Posted by Drew. Filed under weird diseases. Link