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The Star Online: Lifestyle: Health

Misdiagnosed for 12 years

Posted: 11 Jan 2014 08:00 AM PST

Often misunderstood and mistaken for other diseases, hormone-secreting tumours can wreak havoc on your life.

ALLEN Wilson, 50, had complained of general malaise, anxiety, and night and day sweats to his doctor, who insisted he was perfectly healthy, despite him perspiring profusely on a cool day in Ireland.

In 2006, his symptoms worsened and he was prescribed beta-blockers for high blood pressure.

Looking back, Wilson now knows he had been suffering from pheochromocytoma (pheo for short) symptoms for more than 12 years.

A second opinion finally concurred and he was admitted to the Royal Victoria Hospital in October that year.

Interestingly, after conducting his own research on the Internet in 2003, he had asked his physician whether it could be pheo. The doctor had laughed it off and said the disease was so rare, it almost didn't exist, and dismissed him as being overly anxious.

Practice makes perfect: studies show success rates are better in hospitals that perform many of the same types of procedure. Ask the attending doctor how often your procedure is done in the hospital, how often he or she does the procedure, and about patient outcomes. ¿ Chicago Tribune/E. Jason Wambsgans/McClatchy-Tribune Information Services

According to Wilson, open abdominal surgery is no longer necessary in the majority of those with pheo. – MCT

As it turned out, he had three tumours, one on his adrenal gland, and two smaller tumours on the lower lobe of the left lung.

Wilson underwent surgery to remove the tumours in March 2007. It took a team of general surgeons and another team of vascular surgeons 11 hours to remove a very aggressive 12cm tumour.

The surgery was almost aborted on three occasions due to the aggressive adrenal response from the tumour, but thankfully, it was successful.

Two months later, the smaller tumours in his lung were removed. However, he was told his "cancer" had metastasised and that he would be dead before Christmas.

He spent the next 24 hours making peace with his Maker and family, only to be told that pheo didn't progress the same way as other cancers. He was later informed that he was tumour-free and would make a complete recovery.

Then in October 2008, a 3cm liver tumour was discovered right next to his inferior vena cava (a major vein leading from the lower body to the heart). He was started on alpha blockade again, and scheduled for a major liver section in late January 2009.

The Pheo Para Trooper aims to share the latest development on the condition and lend support to patients.

The website enables people to connect and find out more information about the disease.

Wilson contacted the NIH (National Institute of Health) in Bethesda, United States, to inquire about the possibility of (then) experimental radio frequency ablation (RFA) to treat his tumour.

He headed to the NIH, and in May 2009, underwent an embolisation of the artery feeding the tumour prior to the actual RFA.

He has been tumour-free to this day. His current diagnosis is "sporadic metastatic paraganglioma", and goes for regular check-ups to monitor hormonal developments.

Reaching out

His unfortunate experience with pheo spurred him to hook up with Amy Pitzer, Matthew Capogreco and Laura Becktel, leading to the setting up of Pheo Para Troopers (para being short for parangliomas), a US-based non-profit, patient-run organisation.

None of them knew each other before this. Wilson, 50, is chairman of a few small low carbon chemical companies in Belfast, Ireland; Becktel, 41, was a software developer (who lost the battle and passed away in 2011); Pitzer, an automotive engineer in her 40s; and Capogreco, an educator, also in his 40s.

"We realised that we understood patient needs best and could promote appropriate patient care, research and best treatment," says Wilson, now president of Pheo Para Troopers, in an e-mail interview.

Formed after the second pheo/para patient conference in Parsippany, New Jersey, in 2008, the organisation aims to help facilitate patient communication and supply important information such as links to special events, studies and current research developments.

In the long term, hopefully, the collecting and analysing of data from patients will contribute towards finding a cure for pheo and paraganglioma.

Currently, there are about 500 members (and growing steadily), and more than 800 Facebook members, stretching across different continents, with the majority from the United States, and various other countries such as Japan, Australia, India, Ireland, Britain and Malaysia.

Pheo Para Troopers aspires to reach out to more and more countries, and globalise the awareness of this condition.

"We are well on our way to achieving this via local physicians and language translations of our newsletter. There's the website, the drop zone newsletter published in three languages and a Facebook support page (https://www.facebook.com/groups/pheoparasupportgroup/)," Wilson adds.

The organisation operates online, and its raison d'ĂȘtre is advocacy and information-sharing.

"This is a rare disease that is badly and disjointedly treated throughout the world. Our objectives are to spread knowledge of the disease and offer patients a forum and resource guidance on best medical practice and diagnosis.

"It's surprising how many physicians approach treatment badly, especially in less developed areas of the world. Even in first world countries, some still practice kidney removal or open abdominal surgery, which is no longer necessary in the majority of cases," he says.

Pheo Para Troopers also hopes to provide a directory of experienced physicians worldwide, thereby ensuring that patients can identify the most qualified and best physicians with good knowledge of best practice.

"We are in the final stages of creating a common database of patients for better data research. The intention is to recruit international research centres into this one database to look for statistically significant trends within the variants of this disease.

"Most researchers don't have access to enough patients to achieve statistical significance in their work, so hopefully, this facility will empower and enable better, faster and more co-operative international research and treatments," he adds.

"What's important is that you should always take an active interest in your own treatment. This is a complex condition, so wherever possible, only allow experts with demonstrable experience to treat you," concludes Wilson.

While there is no known cure or prevention for paraganglioma and pheo yet, hopefully, with the ongoing dialogue and medical research, progress will someday make this a disorder that can be conquered beyond invasive surgery.

Other avenues of information support include the Pheo Para Alliance, a physician-oriented organisation (http://www.pheo-para-alliance.org/), and the Pheochromocytoma Support Board on Facebook.

Ido in Autismland

Posted: 11 Jan 2014 08:00 AM PST

In the 'silent prison' of autism, a teenage boy speaks out.

I T-H-I-N-K...

Ido Kedar sits at the dining room table of his West Hills, California, home. He fidgets in his chair, slouched over an iPad, typing. He hunts down each letter. Seconds pass between the connections.

... A-u-t-i-s-m-l-a-n-d ...

He coined the word, his twist on Alice's Wonderland.

"C'mon," says his mother, Tracy. "Sit up and just finish it, Ido. Let's go."

He touches a few more keys, and then, with a slight robotic twang, the iPad reads the words he cannot speak.

I think Autismland is a surreal place.

For most of his life, Ido has listened to educators and experts explain what's wrong with him. Now he wants to tell them that they had it all wrong.

Last year, at the age of 16, he published Ido in Autismland. The book – part memoir, part protest – has made him a celebrity in the autism world, a young activist eager to defy popular assumptions about a disorder that is often associated with mental deficiency.

He hopes that the world will one day recognise the intelligence that lies behind the walls of his "silent prison", behind the impulsivity and lack of self-control.

I want people to know that I have an intact mind.

Yet Ido gets nervous easily and likes to retreat to his room or to a cooking programme on television. At one point, after answering a few questions, he steps outside to pace beside the family swimming pool.

He plucks a rose and puts its petals into his mouth.

During summer, when temperatures in the San Fernando Valley push into triple digits, Ido's refrain is "osha, osha", and his father, Sharon, drives him over the mountains to the ocean.

Approaching Zuma Beach on a Sunday afternoon in September, Sharon repeats the rules: "Follow my instructions, and stay behind me at all times."

"Eee, num, num, num," Ido says with a laugh.

"You're happy now that we're going to the beach," Sharon says.

They drop their towels in the sand by Tower 12. Ido waves his arms and grabs Sharon's arm as they march into the waves.

Autism, Ido says, is like being on LSD, something he learned about in health class, and his experience in the world can be at times terrifying and overwhelming. Sensory minutiae that in other people are filtered and organised, collide indiscriminately in his brain. Feelings of anger, sadness, even silliness, can escalate, and he can have difficulty calming down.

The water surges around them. The sound of the waves and seagulls, the voices and screams of children and families, the surf, rising and falling, its ceaseless crescendo and diminuendo, rushes at Ido as a terrible cacophony like the buzzing of mosquitoes, loud and inescapable.

As unsettling and as unpredictable as autism is, it also brings a strange pleasure to Ido's life. Glints of sunshine, pockets of shade mesmerise him, and objects in motion reveal traces of acceleration, like stop-motion photography.

He grabs a strand of kelp, strips off the leaves, and begins whipping it over and over in an S-pattern against the dissolving foam. Waves rise and fall against him, but he stays focused on the movement that he's created against the water's surface.

Like many of his repetitive behaviours – arm-flapping, finger-dancing, string-twirling – this gesture, referred to in the autistic community as a "stim" (for self-stimulation), enhances sensations around him and has a narcotic effect.

They take me to a sensory experience that is pretty intoxicating. I don't get lightheaded, but I can get so absorbed in a stim I sort of vanish from my personhood.

A half-hour later, Ido and Sharon are heading home. Ido cues the Nutcracker Suite on the CD player. Tchaikovsky is one of his favourite composers. Flutes and oboes, trumpets and tuba, triangle, celesta and glockenspiel begin to weave their complex melody.

Music is a beautiful gift. I see pretty images of moving light. Different composers have different patterns.

Ido has a speech to write. In almost two weeks, he will address graduates from the department of special education at Cal State Northridge. The invitation came from a professor who calls Ido in Autismland one of the most profound books he's read.

As committed as Ido is to explaining his experience with autism, he is equally passionate about how to teach autistic children. Some of his worst teachers have become his best teachers for what not to do, and he thinks he knows why.

They have to let go of their love of power.

Sitting in the living room, Tracy, Sharon and a friend, Adrienne Johnston, are helping Ido organise his thoughts. He is communicating with his letter board, a laminated piece of cardboard with the alphabet printed on it. His right hand dances among the letters, a blur of quick expression, far quicker than his iPad.

Johnston, who will be speaking at Northridge as well, works for the Los Angeles Unified School District and helps students with disabilities navigate from special education to general education classes.

She met Ido in middle school and continues to help him at Canoga Park High School.

"When I first graduated, I thought I knew it all," she says, thinking about new teachers. "We need to remind them that their attitudes must be open."

The special education idea is to maintain and contain.

"What should they do, sweetie?" his mother asks.

I think they should all be kept mute one day and sit in a low autism class as a student, listening to baby talk and the weather.

Tracy and her husband laugh. Years of frustration and guilt have turned to pride. She's 53 and works as a school social worker and private therapist, and he's 50, a geophysicist at the Jet Propulsion Laboratory.

They recall one administrator at a former school who insisted that Ido wasn't doing the classroom work, that his aide was answering the questions.

It's a familiar and painful memory. His dependency on others is considered evidence of his inability to think for himself.

After one of Ido's presentations, Tracy was approached by an older man who asked if Ido really understood everything said to him.

"Eeeee, eeeee," Ido interrupts.

"He was a bully," Tracy says, remembering the administrator.

He told my teachers that I was not understanding the work. He would stand behind me taking notes on my behaviour. He told me that I would never graduate.

As an infant, Ido seemed to hit all his developmental benchmarks. He even began to talk at an early age. But somewhere between two and three, he suddenly felt as if he were standing at a divide in a road. Try as he might to join other children, he couldn't.

Tracy remembers the day she got the phone call from the preschool.

"We have our concerns," the administrator said.

Tracy and Sharon took Ido to a psychiatrist, who made the diagnosis in 20 minutes.

Ido was enrolled in Applied Behavior Analysis, the most popular and recognised treatment for the disorder.

For two years, aides set up school in his home and ran through daily drills to teach motor and social skills, such as how to eat with good manners and wash, how to recognise words and emotions, how to wave goodbye and point. Rewards came in the form of tortilla chips, cookies and tickles.

The lessons frustrated him, and the aides seemed unaware of his discomfort. They wanted, for instance, to teach him to maintain eye contact, but light reflecting off eyes unsettles him, and because he was unable to speak or coordinate his hands to indicate comprehension, the drills were repeated.

I felt kind of terrified when I was a kid that my life would be this way forever.

Once Ido started school, Tracy worked with him at home. She helped him hold a pen, and with her hand over his, she guided him through his letters.

He always loved letters. As a toddler, he would clap at the credit rolls on television and sit by the pool watching his grandfather paint the alphabet on the pavement. Ido enjoyed watching the patterns evaporate in the sun. Each letter, he says, has a unique personality; his favourite is H.

One day before his seventh birthday, Tracy and Ido were preparing invitations.

"Please come to my party," they wrote, and when she asked him for the name of a friend, she felt him moving the pen. The lines were wobbly; his coordination was poor, but he was writing the letters himself.

After years of silence, Ido and Tracy had found a way to talk to each other.

When Ido was younger, he hid in a closet when visitors dropped by. On the eve of his 17th birthday in May, he is darting from the dining room into the kitchen. Family and friends have begun to arrive.

Tracy lights two candles for Sabbath and says a silent prayer. She turns to her son. "Happy birthday, Ido," she says. "Here's to a wonderful year, and may you continue to be a blessing."

She kisses his forehead. Sharon drinks a little wine from a small silver cup they received when Ido was born.

After dinner, Ido twirls an upside-down plastic cup on his knife, hypnotised by the motion, and asks to be excused. He settles on the sofa to watch Alice in Wonderland.

Later, over marzipan and white chocolate cake, everyone gathers to sing "Happy Birthday". But at the first words, Ido cups his hands over his ears. Soon, they are whispering the song.

Sensitive to sound, he often wears his "bulletproof" headphones, the type that shooters wear at firing ranges.

Of all his classes, Ido likes his honours English class most, especially because his teacher treats him like other students.

He knows that his behaviour is unusual.

He envies his sister, and wishes he had her independence and friends. Unlike some autism advocates who champion the disorder as an emblem of diversity, Ido would prefer to be typical.

Can I visit Autismland instead of living here? – Los Angeles Times/McClatchy-Tribune Information Services

Mediterranean diet staves off diabetes

Posted: 11 Jan 2014 08:00 AM PST

A NEW study has found that even if you don't lose weight or boost exercise, following a Mediterranean diet can help prevent the onset of type 2 diabetes.

In the Spanish study, people at risk for heart disease who followed a diet of fruits, vegetables, whole grains, fish, and fats from nuts or olive oil, were about 30% less likely to develop diabetes over a four-year period than those who ate a low-fat diet.

The research was a subanalysis of last year's influential PREDIMED study, involving 7,447 subjects at high risk for cardiovascular disease.

Researchers from Universidad de Navarra found that subjects who ate a Mediterranean diet had a 30% greater reduction in the risk of heart attack, stroke, or death from cardiovascular disease than those who ate a low-fat diet.

The new paper, published this week in the Annals of Internal Medicine, looked at the development of diabetes among 3,541 subjects who didn't have diabetes at the beginning of the study.

Even just adding olive oil to your diet resulted in a health boost, the study suggests. Participants who added fats from extra-virgin olive oil were 40% less likely to develop diabetes during the study compared with those on a low-fat diet.

Recent evidence from Harvard Medical School and Brigham and Women's Hospital in Boston, US, also found that middle-aged women who follow a Mediterranean diet may live healthier, longer lives.

Scientists evaluated the diets and medical records of 10,670 women and found that after 15 years, those women who followed a Mediterranean diet were 40% more likely to survive to age 70 or over without heart disease, diabetes, or other chronic disease. – AFP Relaxnews

Kredit: www.thestar.com.my

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