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.