My life since Wilson Disease

Many of us constantly crib about their lives when things go sour, awry and feel life dealt unto them is plain unjust. But if they were to see the world around them - 'BE ALERT' to their precincts, their city/village ....they will realize that they are actually luckier than a certain few.

There are people I have known whose lives are a misery. There are these two friends of mine, in their early twenties,  who 'Live each day with as much as cheer as they can even after knowing well that their days are numbered.' And their enthusiasm is infectious. Yesterday evening, I was quite upset over a few things, but there was something posted on FB by a friend which found me wear a smile. In their own unique way, these friends, dealing with plightful health issues day-in & day-out make us feel special. 

What follows is a GUEST POST by a 22-years-young female friend who despite being afflicted  with the genetic Wilson Disease, makes the best of what life offers her radiating happiness all around. The post is re-produced through an email sent by her to me with her consent. Read on: 

April 29 2008 My life turned upside down,

That was the day ,

I was diagnized with wilsons disease 

Via a brain MRI ,

I was 69 kgs , very healthy and 5 11' IN height 

Admitted in holy  family hosp,

Doctors put me on penicillamine,

Slowly my voice was fading,

My balance was terrible,

The way I walked,

My body slowed down a lot,

I went into severe depression,

was addmitted in Masina rehab,

There they shaved my head,

All the doctors would hold me,

And the female doctor would inject me,

And later take me for  ECTS, electro convulsive therapy,

I took 14 ects,

Went into comma in the process,

But managed to get out,

MY MOM WASN'T SATISFIED WITH THE MEDICINE,

CAUSE SHE COULD SEE ME GETTING WORSE,

medicines are supposed to make you better,

In my case it was opposite,

so mom finally consulted a doctor in holy  spirit,

Dr Vyas , an elderly doctor,

He told my mother give her  zinc,

And next day mom couldn't get zinc tablets, so she bought the powder form,

And consulted with the doctor,

The doctor approved,

Next thing after dinner my mom gave me the powder,

told me to have it,

I took it,

Immediately I kept on vomitting and shitting,

All my body fluid was drained,

My blood to was out,

I was rushed with an ambulance,

Straight into the ICU , My heart stopped beating,

The doctors had to resussicate me, 

I came back,

My mother lost all hope, 

That I would live,

But when I got discharged,

I was 30 kgs,

Just bones,

Over the days, 

MOM STARTED TO NOTICE THAT MY JAW WAS GETTING LOCKED,

And i wasn't eating well,

I had the rials tube in and out 7 times,

But that too did no good,

Finally I was operated in bhatia,

Surgically they inserted a tube,

which connected to my intestines,

From out,

And my mom would  gimme my food liquidifyied,

in the food bag,

It was there for 7 months 

I am a fighter by nature,

I told myself,

I have to fight this,

I am alive,

So what if I am not normal,

At least I get to live a  life,

You never know how strong you actually are until being strong is the only option you got. 

till date i am dealing with many issues,

But I am living,

Thats the bottom line 

I came to know, learn and understand what the genetic Wilson Disease is all about from this girl coping with failing health with grit and gumption only today. 


For the readers, I looked up the trusted Wikipidea on Google and this what they say: 

Wilson's disease or hepatolenticular degeneration is an autosomal recessive genetic disorder in which copper accumulates in tissues; this manifests as neurological or psychiatricsymptoms and liver disease. It is treated with medication that reduces copper absorption or removes the excess copper from the body, but occasionally a liver transplant is required.

The condition is due to mutations in the Wilson disease protein (ATP7B) gene. A single abnormal copy of the gene is present in 1 in 100 people, who do not develop any symptoms (they are carriers). If a child inherits the gene from both parents, the child may develop Wilson's disease. Symptoms usually appear between the ages of 6 and 20 years, but cases in much older people have been described. Wilson's disease occurs in 1 to 4 per 100,000 people.Wilson's disease is named after Samuel Alexander Kinnier Wilson (1878–1937), the British neurologist who first described the condition in 1912

I  would like the readers among you to open up and share their health  problems that they may be facing. This could well go a long way in being an instrument to change in inspiring others who are otherwise healthy but go astray with the vices that the society they live in provides them. 

Mujhse Fraaandship Karoge

Today is the first anniversary of my friendship with one of the craziest girls, I have come to having known, but I am fond of nonetheless. She is a real hun-bun. Edible? That, I would digress from making known :D

A cute girl, right from the outset we have had our fair share of fights. Loves irritating me, not that I am any less :P

Rewinding back to the day I came to know about her – exactly a year back on this day, I was quite upset returning home. Yet another opportunity of watching an International Cricket Match LIVE at the Nehru Stadium, Fatorda, Margao between the home team against the Australians went abegging as playing conditions were deemed unfit.

Back home and switching on t my computer and logging in to FB as is my wont; I had this friend request pending. A cutesy, happy face stared back at me, not that I was taken aback by that but the close to a dozen - and - half mutual friends we shared. And that too my former colleagues at the organization I am with for just over five fruitful years now. I had an inkling at this point where this would lead to.

In my inimitable style, with no courtesy intro message coming in, I did not click the accept friend option. But keyed in a quickie. I asked the gal for an intro and prompt came her reply. And within a few minutes, she became my friend on the social networking tool.  Yes, I am not like the often-found guys on FB (and or Orkut and the like social networking sites for that matter) looking for cute or sexy chicks online to befriend and randomly send requests. Yes, I do send out requests to beautiful girls if I find something interesting about her, but it is always with an intro. Any girl I have befriended online and who I have eventually met or even spoken to for that matter, can vouch for that. I haven’t changed as much. And I stay true to my self.

And that is what this girl came to understand - I can be nice, a real sweetheart but I can also be rude – a meanie. I can be funny, crazy and also can be sarcastic and have my PJs. 

We got to meet sometime before year-end (end December – I think the day was 29^th). I had gone shopping with mom and on my way back home went to meet this FB character of a pal at her work-place behind Grace Church, Margao. Pleasantries exchanged, we did not get to speak much. Alas, she was shit scared of her boss.

In time, I considered her to be one of my good friends or perhaps on her way being categorized thus. I even celebrated her birthday out at Dom Pedro’s, Margao, albeit belated by a few days. That she invited me to attend her grand 21^st birthday three days earlier, took me by surprise. Not that she, hardly had known me in person yet, but that she did not invite her odd friend who she had personally known last few years. It is another matter I had not attended her birthday. But I make her feel special on 9^th Feb, or I suppose I did, with a treat and a nice Aquarian gift for the Piscean later that evening.

B'dai Treat at Dom Pedro's 

At the Aquarium where Val got her Eenie & Mienie - lil Goldfish :)

A day short from the anniversary date of our friendship, she came over to my place to present me with a cute kitty who I have named Valie. A delayed cutesy gift, but nevertheless, so sweet, adorable and meowyyy

J J

Cute Cats at my place yesterday 

She has once said, she can be herself around with me, the feeling is thus mutual. Not known too many girls who are as broad-minded as her with whom I can talk A-Zee. 

Love that pissat a lot ;) Val is what I call that Gal :)