Tuesday, 9 December 2014

Rudy Santos


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In his heyday, Rudy Santos would draw crowds of fascinated onlookers as “Octoman,” the headline attraction of travelling fairs.  Attached to his abdomen are an extra leg, arms, shoulders, what appears to be an ear, and a patch of hair.  His own right leg is deformed and he is unable to walk without crutches

These grotesque deformities are symptoms of a rare condition called "parasitic twin," the result of conjoined twins not fully separating in the womb.  In other words, Mang Rudy has lived his entire life with the remains of his would-be twin attached to his body.

After two decades of earning a living as a freakshow attraction, Mang Rudy settled down to live a quiet life with his wife Evelyn and teenage daughter Riza.  Wanting to live a normal life, the family put up a small sari-sari store in Zamboanga.

Unfortunately, their dreams were dashed when their small stall slowly lost business.  Evelyn made the difficult decision of leaving her family behind in Zamboanga to work as a domestic helper in Manila.  Because Mang Rudy’s limited mobility made it difficult for him to work, the family scraped by on daughter Riza’s meager earnings as a bakery employee.

The GMA program "Wish Ko Lang" learned about Mang Rudy’s plight from a letter he sent to the show.   The program flew Evelyn back to Zamboanga to reunite the family.  Upon seeing her mother, Riza embraced her tightly, crying,  “Mahirap ang walang mama. Parang ako ang naging mama.”  Mang Rudy was at a loss for words when his wife embraced him and said, "Ngayon maalagaan na kita, ang payat-payat mo na!”

"Wish Ko Lang" treated the Santos family to a summer getaway in a popular resort in Dapitan.  They were then presented with a sari-sari store package to help revive their business, which would be newly named, “Ang Tindahan ni Octoman.”  The program also gave Riza a scholarship to any four-year-course at Ave Maria College, a gift that Mang Rudy said was the best of all.

Tom Staniford



BRITISH paracyclist Tom Staniford has discovered he is one of just eight people in the world with a rare syndrome.
Tom Staniford, 23, is unable to store fat under his skin, losing all the fat around his face and limbs during childhood having been born a normal weight. In spite of his wasted frame, Staniford's body thinks he is obese, meaning he has type 2 diabetes. His hearing also became impaired in his childhood, requiring him to wear hearing aids since the age of 10.
Staniford’s condition - MDP syndrome - was not identified until recently, when a research team went to work mapping and analysing his DNA, in a quest to isolate the gene mutation responsible.
This was only possible after a second person with the same condition was found.
Using the most recent genome sequencing technology, scientists from England, India, Italy and the US were able to identify the single genetic mutation responsible for the rare condition.
"All Tom's features can be explained by this one specific change," says Exeter University scientist Professor Andrew Hattersley, who believes the genetic mutation would have occurred in Staniford’s father’s sperm very early in Staniford's life.
Staniford has not let the condition hold him back from achieving several goals, including being British national paracycling circuit race champion in 2011, as well as a degree in law and French.
He hopes to become Paralympic circuit race champion at Rio 2016.
Staniford does concede, however, that his condition presents particular challenges to training: "I have just 40% of the muscles of an average male. I struggle to metabolise sugar and carbohydrates efficiently due to the diabetes - and I struggle to recover due to lack of immediate fuel sources, low testosterone etc.
"My muscles have a very narrow margin of efficiency and they're also tight, stiff and inflexible because I don't have fat to perform that role.
"This is why I have to constantly experiment and attempt to find, through trial and error, what works."
Staniford is not one to dwell on the rarity of his condition, but says: "[It] is reassuring to know that there are other people with the condition and that we can lead relatively normal lives.”

Friday, 5 September 2014

The woman with the 'biggest HANDS in the world':



  • Duangjay Samaksamam from Thailand suffers macrodystrophia lipomastosa
  • Rare condition causes vast build-up of fat deposits in both arms
  • Experts believe she is the only person in the world with the condition from shoulder to fingers in both limbs
  • Simple tasks cause the shop owner huge amounts of pain
  • At 25 she underwent the first of a series of operations to try and treat it
  • But fat removed has grown back leaving her with permanently swollen arms
  • She said: 'Doctors said the only solution was to cut off my hands if I wished to walk around freely. But I don't want to do that'

A Thai woman is thought to have the world's biggest hands - weighing almost one-and-a-half stone each. 
For more than 50 years, shop owner Duangjay Samaksamam, from Surin Province, Thailand, has suffered from an extremely rare and painful affliction that leaves her limbs permanently swollen.
Experts believe the 59-year-old is the only person in the world to suffer the rare condition macrodystrophia lipomastosa from shoulder to fingers on both arms.
It causes vast build-up of fat deposits to be distributed across her arms and hands. 
Duangjay Samaksamam, from Surin Province, Thailand, is thought to have the world's biggest hands, with each weighing almost one and a half stone
Duangjay Samaksamam, from Surin Province, Thailand, is thought to have the world's biggest hands, with each weighing almost one and a half stone
The 59-year-old has the rare condition macrodystrophia lipomastosa, which causes vast fat deposits to distributed across her arms and hands 
The 59-year-old has the rare condition macrodystrophia lipomastosa, which causes vast fat deposits to distributed across her arms and hands 
Moving can be very uncomfortable and even the simplest tasks, such as washing and combing her hair, are extremely difficult for Duangjay.
Embarrassed by her condition throughout her childhood, she spent the first 20 years of her life as a recluse ashamed of the way she looked, meaning she never went to school.
But she was forced to come out of hiding at the age of 20 to earn a living in order to care for her elderly parents, and take over running the family grocery shop.
 


    Duangjay has caught the attention of medics all over the world and many have attempted surgery to decrease the swelling but, to date, none have succeeded.
    She said: 'My hands are so heavy I can barely lift them to comb or shampoo my hair, it's very difficult. Getting dressed is also very difficult and painful.
    'Some doctors said the only solution was to cut off my hands if I wished to walk around freely. But I don't want to do that.' 
    Growing up she struggled to come to terms with her oversized hands - for which there is no cure - and spent most of childhood avoiding people, skipping school and hiding in the family home.
    'My mum told me that I was like this since I was born. I became afraid to go out or go to school, so I never learned to read,' she said.
    Moving can be very uncomfortable and even the simplest tasks, such as washing and combing her hair, are extremely difficult for Duangjay
    Moving can be very uncomfortable and even the simplest tasks, such as washing and combing her hair, are extremely difficult for Duangjay
    Embarrassed, she spent the first 20 years of her life as a recluse ashamed of the way she looked, meaning she never went to school. But she was forced to come out of hiding at the age of 20 to earn a living in order to care for her elderly parents, and take over running the family grocery shop, pictured above 
    Embarrassed, she spent the first 20 years of her life as a recluse ashamed of the way she looked, meaning she never went to school. But she was forced to come out of hiding at the age of 20 to earn a living in order to care for her elderly parents, and take over running the family grocery shop, pictured above 
    Embarrassed, she spent the first 20 years of her life as a recluse ashamed of the way she looked, meaning she never went to school. But she was forced to come out of hiding at the age of 20 to earn a living in order to care for her elderly parents, and take over running the family grocery shop, pictured above 
    She said: 'My hands are so heavy I can barely lift them to comb or shampoo my hair, it's very difficult. Getting dressed is also very difficult and painful. Some doctors said the only solution was to cut off my hands if I wished to walk around freely. But I don't want to do that'
    She said: 'My hands are so heavy I can barely lift them to comb or shampoo my hair, it's very difficult. Getting dressed is also very difficult and painful. Some doctors said the only solution was to cut off my hands if I wished to walk around freely. But I don't want to do that'
    At the age of 25, she started undergoing a series of operations to try and treat her condition but rather than improving the situation the surgery made it worse
    At the age of 25, she started undergoing a series of operations to try and treat her condition but rather than improving the situation the surgery made it worse
    Raised in a rural village in Thailand, there were no medical experts who could provide treatment and Duangjay was so self-conscious that she refused to go out in public.
    But when her parents became elderly and unable to work, she had no choice but stop being a recluse and take over the family business.
    As news spread of her condition, at age 25 she started undergoing a series of operations to try and solve her problem.
    Experts believe she is the only person in the world to have the condition from shoulder to fingers in both arms
    Experts believe she is the only person in the world to have the condition from shoulder to fingers in both arms
    But rather than improving the situation, the surgery made the condition worse.
    Duangjay who now lives with her sister and her niece, said: 'During the surgery they didn't remove any tissue, just opened it up, opened up my arm to check it.
    'They said it wasn't bad tissue just really thick fat in there, but they didn't remove anything for fear of damaging the nerves.
    'After five months my wrists began to hurt. I felt so much pain. I couldn't sleep.
    'If I held something it would fall out of my hands because I couldn't feel them.'
    Having undergone two further operations, Duangjay was left in a crippling condition.
    She added: 'They removed about 700 grams of fat and blood out of my hands but after a month it just grew back.'
    Months later she was contacted by a doctor, from Kitasato University in Japan, who flew her to the country for MRI scans and discovered she was suffering from Macrodystrophia Lipomatosa.
    Plastic surgeon Dr Eiju Uchinuma said: 'This case is very rare. Both her arms are enlarged. Her arms and hands are enormous so they swell badly but it could be worse.
    'My diagnosis is that she is the first and only person in the world who has Macrodystrophia Lipomatosa from shoulders to her fingers on both arms.
    'The cause of the disease is unknown and is therefore incurable.'
    Duangjay's story appears in a new series of Body Bizarre, September 25, 9pm on TLC.