Hair today, gone tomorrow

Hair today, gone tomorrow: Chinese girl with rare genetic 'werewolf' syndrome to receive treatment

A four-year-old girl suffering from a condition leaving her body covered in hair, is set to receive treatment to beat her illness.

Jing Jing has a genetic disease which has resulted in thick black hair growing not just on her head, but also on her face and body.

Now, doctors at a plastic surgery hospital in Changsha, capital of southern China's Hunan Province have offered to help the little girl.



Help: Jing Jing, aged four, is covered in excess hair as a result of a genetic condition, but is now set to receive treatment to cure her



Treatment: Jing Jing suffers from a form of Hypertrichosis causing thick black hair to grow all over her body

Little Jing Jing’s mother appeared at the hospital in Changsha, thanking the medical experts who promised help to her daughter.

Jing Jing has a form of Hypertrichosis universalis, a genetic mutation in which cells that normally switch off hair growth in unusual areas, like the eyelids and forehead, are left switched on.

Hypertrichosis sufferers like Jing have abnormal hair growth on their bodies and faces, and in the case of females an appearance of having a beard.

It is thought that it may take up to two years for Jing Jing to complete treatment.

Hutchinson-Gilford Progeria

Oct 172011
  My name is Hayley Okines and people tell me I am special.

I have a disease called Hutchinson-Gilford Progeria that makes me age eight times faster than other people.

The easiest way to explain it is it’s like my body is 100 years old when I am actually thirteen but I don’t like it when people call me old because I don’t feel like I am 100 years old.

I am smaller than other kids my age. I have a brother, Louis, who is nine and a sister, Ruby, who is six. Although I am the big sister in the family they are actually bigger than me.

Mum says I am one in eight million because my condition is so rare. I have had lots of TV programmes made about me because I am so different, and people I don’t know come up to me and say, ‘Hi, have I seen you on the telly?’ and I have to smile and be polite.

Living with progeria is hard because people treat you like a baby. The worst is having all the treatment and needles. I have been going toAmericafor special treatment that we hope will cure my progeria. I know the new drugs will not make me look like other kids but they will help me to grow hair and live longer.

Sometimes people ask me if I could have three wishes would I wish I didn’t have progeria. And I say no. It would be good to not have it, and it would be fun to go out and not get stared at and not have loads of people ask questions. I would rather have progeria than not have it, though. Don’t ask me why, but I wouldn’t change it.

When Mum and Dad first found out I had progeria the doctors said I would only live to thirteen.

On December 3 2011, I was fourteen.

I am not worried about dying. They said the Titanic wouldn’t sink but it did, so that proves experts can be wrong and I want to prove the doctors wrong.

My life with progeria is full of happiness and good memories. If I didn’t have progeria I would not have done most of the cool things I have done or met most of the cool people I have met.

Deep inside I am no different from anyone. We are all human.
Old Before My Time: Hayley Okines’ life with progeria

The Tree Man of Java

Dede Koswara is a 35 year old fisherman in Indonesia. As a teenager, he cut his knee, and ever since then strange growths have covered his body. The growths on his hands and feet look especially like tree roots, and the large patches on his skin resemble the bark of a tree. As such, he’s simply called Tree Man. 

 Unsurprisingly, Dede has difficulty functioning, since he can’t use his hands and his feet are often a hindrance. He lost his job and his neighbors shunned him. His wife abandoned him, despite their two children. To support them, he began working at carnival freak shows, something you’d expect to see in a movie but that is, sadly, the truth of his life. Link Dede is thought to suffer from a tongue-twister of a disease known as Epidermodysplasia verruciformis. 

What this means is that he has an abnormal susceptibility to human pappilomaviruses. Human pappilomaviruses (HPVs) are extremely easy to contract, and it has been suggested that up to 80% of people may be infected, though they show no symptoms. There are around 200 known types of HPV, but the majority have no noticeable affect. In rare instances, it can lead to certain forms of cancer, but the most common result of an HPV infection is your simple, everyday wart. Because of Dede’s body’s inability to stop the development of these growths on his skin, they have simply become larger and larger over time. 

The hands and feet are especially vulnerable to HPV, and as such his “roots” have grown especially large there. For 20 years, the case has baffled doctors. While scientists understand the cause of his problem, nobody has been able to truly cure it yet. In 2007, Dede made international news when he hit the Internet and was featured in “My Shocking Story” on the Discovery Channel and TLC. (This show is “Extraordinary People” in the United Kingdom.) Later, in 2008, he was the subject of an episode of the popular program “Medical Mystery” as well. 

Link Doctors in the United States believed they could treat Dede. However, officials from Indonesia’s Ministry of Health were hesitant to let him travel for treatment. Lily Sriwahyuni Sulistiyowati, the spokeswoman for the health ministry, stated that they were “clear about not giving [U.S. doctors] permission to bring Dede to the U.S.” She went on to elaborate: “Moreover, people like Dede, who live in small villages, don’t want to be taken away, especially to give blood samples. 

Normally village people don’t easily give foreigners permission to test their blood.” After months of negotiations, Dede was finally treated. He underwent extensive surgery, and 13 lbs (6 kg) of overgrown warts were removed from his body. The surgery had three parts. Firstly, they removed the thick layer of wart tissue and the immense “roots” from his hands. Secondly, they removed the smaller patches of warts from the rest of his body. Thirdly, they grafted skin over his hands, where the skin was removed. The hope was that his growths would not return, or would at least return very slowly. Link This, sadly, was not the case. 

Though 95% of his warts were removed, they grew back, and doctors estimated that it would take two surgeries a year for the rest of his life to keep them away. However, the surgery was far from a total failure. Though he will never be fully cured, Dede regained much functionality. He could feed himself, use a cell phone, and hold a pen, for example – all of which were things he could not do before. 

From the hospital, he remarked: "What I really want first is to get better and find a job. But then, one day, who knows? I might meet a girl and get married." It’s reported that he has become a fan of Sudoku, since he can now hold a pen. A dermatologist in the United States has suggested that high doses of Vitamin A may help him keep the growths at bay by boosting his body’s ability to fight HPV, and talks were in place with pharmaceutical companies to keep him in high supply. 

 

Dede’s case is probably the most extreme along these lines, but he’s not exactly alone in his affliction. In March 2007, a Romanian farmer named Ion Toader was also diagnosed with the condition. His pictures also frequently appeared in blogs and news stories for some time following his diagnosis, and his growths primarily affect his hands (which are not as extreme as Dede’s.) Another “tree man” was introduced to Dede 2009, who was even from the same region of Indonesia as him. Their meeting was documented in a Discovery Channel featured called “Treeman Meets Treeman”. 

In another instance, an Indonesian man in Holland had the condition as well, and was treated with radiation therapy. The results were favorable in shrinking his growths, but unfortunately he developed cancer. It is not known for sure at this time precisely why this condition has affected men in Indonesia more than elsewhere.

Haiti Moves A Step Closer Toward Eradicating Elephantiasis

Boys at the L'Ecole Les Freres Clement elementary school in Jacmel, Haiti, line up to take deworming pills that protect against elephantiasis.Maggie Steber for The Washington Post/Getty Images

Haiti has finally carried out a nationwide campaign to get rid of the parasitic worms that cause elephantiasis.

Haiti has waged other campaigns against the condition, characterized by severe disfiguration of the legs and arms. But until now, it has never managed to adequately reach residents of the chaotic capital Port-au-Prince.

The latest effort by the Haitian Ministry of Health now puts the country on track to wipe out elephantiasis within the next four years, says a study published in the Morbidity and Mortality Weekly Report.

Two women with elephantiasis wait at a hospital in Leogane, Haiti, in May 2012.Maggie Steber for The Washington Post/Getty Images

Elephantiasis — officially called lymphatic filariasis — is a cruel condition. Parasites invade your lymphatic system and cause grotesque swelling, primarily of the legs, but also, at times, of the arms and scrotum.

In some parts of the world, lymphatic filariasis is called "big foot." But even this term downplays the extent of the disfiguration it creates. Elephantiasis can cause massive folds of excess flesh to hang from a person's hips, thighs and calves and sag toward the ankles. It can make a man's scrotum swell to the size of a basketball.

People are the only known host for the roundworms that causes elephantiasis. The fight against the disease focuses on mass deworming campaigns. In Haiti that means getting everyone to swallow two pills. The idea is that if you can get 65 percent of the population dewormed for several years in a row, the parasites can no longer survive in the community, and they disappear for good.

Until now, Haiti hasn't been able to reach the 65 percent threshold in Port-au-Prince, a metropolitan center with more than 2 million people. The mass distribution of deworming pills will have to continue for another four years before health workers are confident that the parasite has been eliminated from Haiti.

The University of Florida's Dr. Madsen Beau de Rochars has been treating Haitians with elephantiasis for nearly two decades. He says the condition can be devastating. "It's a big burden economically and physically for that person," says Beau de Rochars, who worked on the current study. People with the illness are often ostracized.

Haiti is one of just four countries in the Americas where elephantiasis remains endemic. It's also still found in parts of Brazil, the Dominican Republic and Guyana.
The successful deworming campaign in Haiti is a major step forward not just for the country but for the whole region, saysPatrick Lammie, an immunologist with the Centers for Disease Control and Prevention, who also contributed to the current study.

"If a country like Haiti, with all of the challenges that they've faced over the last few years, is able to achieve full national coverage, I think that is as an important example for other countries, which are struggling to scale up their programs as well," he says. Eliminating elephantiasis in Haiti would also help the Dominican Republic control the disease.

Beau de Rochars is confident that Haiti will wipe out elephantiasis eventually. "I had a dream back in 1995 when I first started working in lymphatic filariasis," he says. "And my dream is to see the certification of elimination [of lymphatic filariasis] in Haiti. This is my dream. I'm a Christian and I believe God will help me to see that."

'End in sight' for elephantiasis

A painful and disfiguring disease affecting more than 100 million people worldwide could be wiped out by 2020, say experts.

Lymphatic filariasis (LF), often called elephantiasis, is caused by parasitic worms and causes grotesque swelling of the limbs, breasts and genitals.

A World Health Organisation-sponsored drive has delivered 1.9 billion doses of a simple cure since 2000.

Pharmaceutical firms have offered drugs free, keeping costs minimal.

" We are on track to accomplish our goal of elimination by 2020."

Mwele Malecela
Global Programme to Eliminate LF

The success of the programme was highlighted in a paper in the Public Library of Science Neglected Tropical Diseases journal.

The project, masterminded by the Global Programme to Eliminate LF, has so far prevented an estimated 6.6 million children from catching the condition, and stopped it from progressing in another 9.5 million people who already have it.

It is thought to be the most rapidly expanding drug administration programme in public health history.

Dr Mwele Malecela, who chairs the programme, said: "We are on track to accomplish our goal of elimination by 2020.

"When we do, this programme will be a leading case study for how to scale up disease elimination programmes globally".

There are 83 countries in the world where the disease is endemic, and the programme has so far administered treatments in 48 of them, to more than 570 million people.

The scale of the challenge is immense - approximately one fifth of the world's population, or 1.3 billion people, is said to be "at risk" of contracting LF.

Other benefits

The treatment uses a combination of two drugs, both donated free of charge from GlaxoSmithKline and Merck and Co.

These need to be given once a year for five years to ensure that the disease does not spread.

Another benefit of the drugs is that they also tackle intestinal worms, and approximately 100 million children and women have been treated for these.

Professor David Molyneux, from the Liverpool School of Hygiene and Tropical Medicine, and the Executive Secretary of the campaign, said that the success of the project was "staggering".

"In some countries we are talking about costs of five pence per person, per year.

"We are reaching hundreds of millions of the world's poorest people, and it's the additional benefits these drugs bring which are really important.

"I think that compared to most other public health programmes, it's going remarkably well."

Boy With Neurofibromatosis Scores TD for East Carolina Pirates

Little Noah Roberts, an 8-year-old from Wilmington, N.C., might be fighting a major medical battle, but that didn’t stop him from bulldozing down East Carolina’s football field Saturday, scoring a touchdown for the Pirates in the fourth quarter of their final spring-practice season game.

“Oh, my gosh. He was so excited,” Noah’s mother, Lisa Roberts, 44, told ABCNews.com. “When the coach first told him what they wanted to do, he got the biggest smile on his face.”

East Carolina University’s football staff had heard about Noah’s struggle with neurofibromatosis, which causes potentially cancerous tumors to grow in the nervous system, and wanted to do something special for the sports-loving boy whose older sister, Whitney, 18, attends the university.

“About a year and half ago, even before my daughter was a student there, the school approached us because they had heard about Noah’s story and his battle with neurofibromatosis,” Roberts said. “They contacted us and said, ‘Would you like to bring him out for a practice to meet the players?’ He loves sports and was very excited about doing that. We were so touched by their generosity and support for Noah.”

RELATED: 7-Year-Old Cancer Patient Scores Touchdown for Nebraska Cornhuskers

And as if previously meeting the players wasn’t enough excitement for Noah, the family later heard back from the coaching staff again, this time with an even bigger offer: to join the team on the field to score his very own touchdown.

Knowing how excited Noah would be for the opportunity, his parents decided to keep the offer for him to suit up a surprise.

“We didn’t tell him,” Roberts said.

But the timing was perfect.

In his short life, Noah has already undergone surgeries to remove tumors from his brain and spinal cord. Recently, however, he was particularly apprehensive about upcoming tests he needed in Washington, D.C., to check the status of new tumors his doctors found.

“He’s always been a good, go-with-the-flow kid and never complains about anything,” Roberts said. “He has been through so much in his little life, but he always has a really good attitude. For some reason, though, the last week before we went, he broke down several times and cried, saying, ‘Why do I have back to the hospital?’

“We kept trying to reassure him. So when this came about, we said, ‘How would you like to go to ECU on the way?’ It just brightened him up.”

RELATED: Marine Surprises Sons at East Carolina University Football Game

When the family arrived to the stadium, the coaches sat him down to break the news a few hours before the game.

“He was so excited, but after about 10 seconds you can see that whole expression change to a little bit of fear. But he’s such a good kid, he didn’t want to bring that up,” Roberts said. ”The coaches made him feel great, though. They said, ‘Now, we’re going to have your back, and this is how it’s going to go down.’”

The video of Noah’s special touchdown has become an Internet favorite, surpassing 71,000 views on YouTube since ECU posted it April 20.

“This gives him something so positive to focus on,” Roberts said. “He’s still focusing on it. Everyone’s calling. He’s not typically a kid that enjoys the limelight, so this is really big for him.”

Noah got to keep his jersey, helmet and the game ball signed by head coach Ruffin McNeill, which is certainly making his D.C. hospital stay much more enjoyable.

“It’s just brightened his spirit so much,” Roberts said. “He keeps putting on the ECU helmet and standing in front of the mirror. We’re just excited because he’s so happy.”


(Image Credit: Courtesy Lisa Roberts)

Neurofibromatosis-Porter Colley

Ripley's Believe or Not!

Neurofibromatosis-Porter Colley. 

A Beautiful Lady who has Neurofibromatosis.