The choice is with us

“The choice is with us; let us will it, & our habitation becomes a paradise. For the will of man is omnipotent, blunting the arrows of death, soothing the bed of disease, & wiping away the tears of agony. And what is each human being worth, if he do not put forth his strength to aid his fellow-creatures?”

Mary Shelley

KLS - Rare Sleep Disorder

I just read about this courageous 22 year old woman Alanna Wong who is suffering from Kleine-Levin Syndrome (KLS). It’s a rare sleep disorder that makes her fall into a trance without warning. She sleeps for 22 hours at a time and throws terrifying tantrums. She behaves like a baby & she’s unable to read or communicate. Basically she becomes unpredictable every time she goes into trance. Once it even lasted for 8 months & she doesn’t remember anything later on.

The doctors took many years to diagnose this problem. At first, they thought she had schizophrenia & those medications worsen her condition. . Since KLS is so rare, it mainly affects men in their 20s. Naturally doctors failed to recognize the syndrome in Alanna. She was just 10 year old when she got KLS & she suffered even more for 8 long years owing to the fact that she was misdiagnosed.

Her mother Diane read about KLS online, & then a specialist confirmed that Alana was suffering from this rare disorder. Her brain scans revealed the thallomys (the area responsible for normal sleep and wake functions) was lacking in activity when she was going through one of her episodes.

'To know what was causing everything was a huge relief. I was finally able to say to people what was wrong with me and explain that I wasn't just weird. It changed my life, and now I'm trying to rebuild. Teens and high school years are hard enough, but KLS makes it a million times worse’ said Alana.

She added: 'It's just too difficult. 'I can't do jobs where an episode can trigger and stop me from doing what's needed at work. At college, nobody would understand if I went into an episode during a class. And I might miss weeks of coursework because I had an attack. I'll be focusing on a career I can manage from home with flexible hours.'

Now she wants to help others who are affected by KLS. She runs the charity klslife.com to raise awareness & offer support to families. She’s also writing a book of her experience, which will come out later this year.

The problem is that doctors haven’t yet defined as to what causes KLS. Dr Christian Jensen, said: 'KLS is a rare condition and, therefore, is relatively unknown. It can be devastating for people who suffer with it and, sadly, there's no definitive treatment.'

Since Alana has suffered for so long, she knows this disease & I like her attitude. She wants to help others – that’s something even rare. Lots of people have health problems; they only complain but never bother to lend a hand to anyone in need. Moral support counts a lot in a world where no one has time to understand the sufferings of others. You have to have a very open mind to comprehend such illnesses. Alana too had been judged. People thought she was an attention seeker or something. She was bullied in her school. Doctors suspected that she was taking drugs. It’s very difficult when people are assuming all the time that you are an attention seeker whereas in reality you’re suffering from a disease.

Alana also said: 'If I can help just one person get diagnosed and find support, I know I will have contributed to society in a very positive way. Looking back on the 20 years that I’ve lived, even though KLS had devastated many parts of my life, I am grateful for the life lessons it has taught me.'

Check out her website:

KLS Life – a place to remember every dark cloud has a silver lining

Mind reading device could become reality

A device which reads the thoughts of brain-damaged patients could become a reality, scientists claimed, after proving they could tell what someone was hearing just by decoding their brain waves.

Any such device is a long way off because researchers would have to make the technology much more accurate and find a way to apply it to sounds which the patient merely thinks of, rather than hears.

It would also require electrodes to be placed beneath the skull onto the brain itself, because no sensors exist which could detect the tiny patterns of electrical activity non-invasively.

But the proof-of-concept study published in the Public Library of Sciences Biology journal could offer hope to thousands of brain-damaged patients who face the daily agony of being unable to communicate with their loved ones.

Source:

Mind reading device could become reality

A very brave young girl

Adrienne Greenway, 25, from Dover, passed away earlier this month from pneumonia. She suffered from what is known as a premature ageing disease. Sufferers rarely outlive their teens.

She was quite an inspirational soul. She even had a string of celebrity admirers owning to her charity work & positive attitude towards life.

Stella McCartney even designed a dress for her. Jude Law gave an impromptu address at her funeral.

According to her mother Allison: 'She had an incredible life, she has traveled the world but she also loved that she had "normal" friends and was able to go to "normal" school. She always put other people first and was conscious of those worse off than her.'

I think her story is of course inspirational. To think about others while you are suffering is indeed a big & rare thing.

Moreover her mother added, 'She was an inspiration. She inspired everyone she met, she was a beautiful girl.

We totally agree with her mom. Adrienne was/is & will remain an inspiration for all those who want to see positive things in life. I don’t think such people ever die. They continue to live in memories.

Teenage girl making amazing recovery

Rachel Attridge who is just 17 year old was diagnosed with a rare disease in which the body’s immune system attacks the nervous system by mistake. In scientific terms, you call it Guillain-Barre Syndrome. She ended up paralyzed from waist downwards & she had been on life support machine for a year, but now she has shown immense improvement. In fact, she’s recovering every day. She has also returned to college.

Rachel said: 'I'm glad it's all over. I've been told it may take three years for the nerve endings that were damaged to fully recover…I wouldn't want any other person to suffer the issues I had had to go through over the past year.But I'm getting better and better everyday, loving life again and looking forward to completing my studies and doing what I love most.'

First of all, this teenager went through a terrible experience but while she was showing signs, one of the doctors accused her as an attention seeker. When you are sick, this is the last thing you want to hear from a doctor. Since doctors are humans, they can’t help being insensitive. However, I think this is highly unprofessional behavior. I know it’s very difficult to diagnose a rare disease immediately. It takes time, but when a patient is telling you that she has trouble, she can’t be lying.

Earlier on, her symptoms were dismissed as that of flu by the doctors & she was asked to take some painkillers & rest for a while.

Astonishingly, despite her worsening condition, two more doctors dismissed her pleas for help - with one even suggesting it was down to her being pregnant .Another insensitive doctor suggested that she might simply have been attention seeking.

Rachel was completely paralyzed for four months, with a ventilator keeping her alive.

According to her mom, she was tube-fed through her nose and had to have everything done for her. If we had not got her to hospital when we did, she would have died in my arms at home. It has been sheer hell, to be perfectly honest.

Anyway, I’m glad that Rachel’s nightmare is over & she’s so positive about life. That’s the spirit.

And here’s little info on Guillain-Barre syndrome:

Guillain-Barre syndrome is an autoimmune disorder (the body's immune system attacks itself). Exactly what triggers Guillain-Barre syndrome is unknown. The syndrome may occur at any age, but is most common in people of both sexes between ages 30 and 50.

Guillain-Barre syndrome damages parts of nerves. This nerve damage causes tingling, muscle weakness, and paralysis.

Some people may get Guillain-Barre syndrome after a bacterial infection. A similar syndrome may occur after surgery, or when someone is critically ill (neuropathy of critical illness).

Is Sex Addiction a Real Disease — or an Excuse?

I went through this amazing article but unfortunately not much has been explained & I believe not much can be done either.

The important question that has been raised is: Why would these men risk everything to satisfy their urges? I believe the answer could be provided by those who are addicted but then we don’t have very honest people, to begin with. Moreover, they say the line between morality & disease has always been blurry. There have been other pertinent questions such as: at what point do partners in a healthy relationship become too focused on sex? And what constitutes too little sex? And some people even think that little is too much. The definition of wild has been invariably different from person to person. What is wild may not be unhealthy.

Even if they would call it a disorder, it may not solve the problem. Many think that it’s the internet which has caused all the trouble. People now indulge in forbidden acts (which include unhealthy behaviors and extreme desires). I really don’t believe in this crap that the net is responsible for extreme desires. People were not angels before the arrival of the net.

Antihormone drugs could help but it’s not healthy. The side-effects are too bad. It results in chemical castration. Now that cannot be recommended unless you’re a sexual offender of highest order. Total abstinence is also not possible. Plus there are all kinds of people. Some desire too much & some are content with nothing. Some people just go on blabbing & they think it’s so sexy. Some people have excessive desires & they just can’t help it. Moreover, you have to face your demons…you have to cross the boundaries to know yourself. How can you possibly draw the line? What is sexy for one person maybe sickening for another? There is not one answer.

Sex addict meetings are also quite awkward. It’s difficult for people to express themselves. Most of them have lost spouses & jobs.

Science also doesn’t have any clear cut answer cause the brain chemistry of sex addiction is not well understood.

“Your sexuality — your orientation, your level of desire, what you consider romantic satisfaction (orgasm, love, validation, all of the above) — is a complex amalgam that involves your brain's hormonal system, its frontal-lobe reward system and its limbic system, which controls mood. Genes regulate these neural pathways, meaning that sexuality is partly heritable, but the environment in which you develop sexually can affect how those genes are expressed.”

If you inherit something not healthy, how can Science help? And yeah if you are surrounded by sexual maniacs & perverts, naturally you would find everything okay & you may find those who are not like you totally impotent & cold potatoes. And how can you help when people are not willing to speak where they are supposed to talk about their problem?

I once read this article in which women said that they don’t mind having sex with their guy friends when they are down; they just have it out of sympathy. Even this sounds weird. Some people also say that talking cannot help; in fact it aggravates the problem, cause when they express themselves, their partners don’t like it.

I believe there is no clear cut solution but it’s always fun to read such write-ups.We can't say if it's a disease or an excuse...you should find your match. There are all kinds of people in this world, after all.