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Last Updated: Saturday, 18 October, 2003, 23:00 GMT 00:00 UK
Learning to live with Lupus
By Tory Milne
BBC News Online Staff

Nisha's acting career was taking off
Nisha in the early stages of her career
22-year-old Nisha (Nishita) Sharma's future was looking bright. Her career as an actress was taking off.

She spent the Christmas of 1990 acting in a play in London and in January, a tired Nisha came down with flu.

She didn't know it then, but this virus was the first sign of a problem that would rob her of many of her dreams.

It took a while for her to recover from the flu, but when she felt better, she went on a trip to visit relatives for a family wedding in Kenya.

There, she noticed she was losing weight dramatically, going from a size 12 to a size 8. Her hair also started to fall out, and she found she had difficulty tolerating food.

When she returned from Kenya, she started another production, but this time producing it and acting in it herself.

She began to develop stiffness and pain in all her limbs, and felt tired all the time.

"But I just ploughed on with the production - you know, the show must go on", she says.

However, the symptoms continued to get worse, and she pulled out of the play in a state of collapse.

Exhaustion

Her parents and fiancÚ called over a succession of GPs, who all diagnosed her with exhaustion and advised bed rest.

Frustrated, her fiancÚ took her to a private hospital where doctors found that she had severe inflammation all over her body, but couldn't find out why.

Her health continued to deteriorate.

Her joint pains became so bad she couldn't even walk.

"Ultimately I collapsed, and was just put to bed. I had to return to live with my parents".

She remained in bed for a month, and again, visiting GPs diagnosed nothing more sinister than 'flu'.

Lupus - the facts
Lupus is a chronic autoimmune disease where the immune system becomes hyperactive & attacks normal tissue
It can affect almost any system in the body
Its exact cause is unknown.
Symptoms include: fever, a 'butterfly' shaped rash on the face, hair loss, fatigue and painful joints

"It was very frustrating, because things were actually getting worse. By this point I couldn't even go the toilet on my own".

Possible diagnosis

Eventually, a relative suggested she might have an auto-immune disorder called Lupus. Nisha resolved to mention it to her GP on her next visit.

The doctor agreed it was worth investigating, and sent her for a blood test at her local hospital.

Once she arrived, staff realised she needed specialist care, and admitted her.

A test was carried out that was designed to detect Lupus - but her tests were only slightly abnormal, so two weeks later, she found herself being sent home, still without any answers.

The minute she got home and was put to bed, she began to have a stroke.

"I was rushed back into hospital, this time in a semi-comatose state. Suddenly people started taking notice of me, and realised something really quite serious was going on inside my body".

She was rushed from there to hospital, where, because of her stroke, she found herself on a Neurological ward.

She was put on a very high dose of steroids and immuno-suppressive therapy.

Her doctors had realised that Lupus was a real possibility, and this meant that the cells in her body were attacking each other - so she needed to take medication that would stop the attack.

Paralysis

Nisha remained in hospital for five months. She lay there unable to move, and semi-conscious.

"I wasn't able to close my eyes, because my facial nerves were paralysed".

Unable to speak, she spent many hours willing her body to mend itself.

With the help of physiotherapy, she learned to speak, move, swallow and walk again, but it was a long and arduous process.

Doctors had also prescribed her steroids, which, while vital for controlling the disease, made her more anxious and not herself.

Nisha Sharma
Nisha likes to travel
Lupus had also affected her sight. She had double vision for a year after her stroke.

One day she looked in the mirror, and realised the extent to which the disease had changed her.

" I had lost my face. It was mostly paralysed. My appearance had completely changed. I'd lost my ability to smile. I was unrecognisable to myself. "

Isolation

It was also painful to notice what her direct contemporaries were doing with their lives - getting married, having careers, and having children.

"And it was particularly hard, because now my friends were the people I met twice a week at the hydrotherapy pool, some of whom were dying".

But Nisha decided to take her life in a new direction.

"I had to fight everyday. This disease has brought out the inner me, and the inner me is a fighter and a creator, and a communicator."

After slowly doing a part-time Masters degree in Theatre and Directing to re-socialise herself into the outside world, she decided she wanted to be a journalist, and went to City University to study for a postgraduate diploma.

Living a full life

It is now 12 years since her stroke, and she is a freelance journalist in London.

She is on a much lower dose of steroids, but is still taking immuno-suppressants, and is therefore vulnerable to infection.

She knows Lupus will never leave her entirely, but she has learned to live with it and control it. She has hopes for the future.

" I would like to have a family. I'd really like stability, because this disease denies you that. But I see the world in a way now that I would never have done if I didn't have Lupus, and I want to continue that journey".


SEE ALSO:
Baby hope for lupus sufferers
02 Jun 02 |  Health
Immune disease breakthrough
23 Dec 00 |  Health
Cancer drug offers lupus hope
13 Jan 03 |  Health


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