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Last Updated: Saturday, 18 September, 2004, 03:38 GMT 04:38 UK
Treatment 'put my fertility at risk'
By Jane Elliott
BBC News Online health staff

Rachel Elwood and her son
Rachel thought she would never have children
When Rachel Elward was 17 her body started failing her.

At first the sports-mad youngster developed unexplained nose bleeds and stomach pains.

Then she lost her hearing and her legs started to swell so badly that she was forced to give up her paper round.

Frightened, she says she received little sympathy from doctors, who she felt suspected she was simply a hypochondriac.

Every time somebody asked me how I was I could never say: "I am OK"
Rachel Elward
Because her symptoms were so diverse, doctors were at a loss to pinpoint what was causing the problems.

"Over just nine to 10 months I had a number of symptoms.

"When I first had my nose bleeds they told me that they thought it was hay fever, but I knew it was not because it was September and October.

"Then I got stomach cramps. Every time somebody asked me how I was I could never say, "I am OK". I started losing my hearing."

Rachel was eventually referred to an Ear Nose and Throat (ENT) clinic and took along an A4 list of all previous problems to impress on the doctors how serious her condition was.

Rare condition

The doctor who examined her recognised the symptoms and thought they could be connected - believing Rachel suffered from the rare condition Wegener's granulomatosis.

Vasculitis
It can affect many parts of the body
Symptoms vary greatly from sinusitis and swollen legs to breathlessness and deafness
It is difficult to recognise and many cases go undiagnosed for months and even years
As many as 3,000 people in the UK suffer from the disease
It can manifest itself as Wegener's granulomatosis, Kawasaki disease, microscopic polyangiitis, Churg-Strauss syndrome and polyarteritis nodosa
A form of vasculitis, Wegener's granulomatosis causes the blood vessels to become inflamed.

Even though she knew she was seriously ill, Rachel said she was relieved to finally have a name to put to her condition.

"I did not know anything about Wegener's granulomatosis. All they could tell me was that years ago it would have probably killed me."

Despite the diagnosis Rachel's problems were only just beginning.

She was put onto a drug called cyclophosphamide but doctors failed to tell her that one of the side-effects were that it would probably make her infertile.

When she finally realised this, it was too late.

Fertility damage

"If I had known it would affect my ovaries I would have frozen some of my eggs.

They said there was no way I would have children
Rachel Elward
"They said it would be impossible for me to conceive.

"We tried to have blood tests done to confirm this, but I was not having a regular cycle and it was impossible for them to carry these tests out.

"They said there was no way I would have children."

This was devastating news for Rachel, who had married her long-term boyfriend at the age of 21.

She says her inability to have children was mainly to blame for her marriage ending two years later.

Her health started to deteriorate, she suffered skin rashes, had bladder problems and needed to change her drug regime.

Internal problems

And then the Wegener's granulomatosis started to spread.

Rachel Elwood and her son
Dylan is likely to be an only child
Her larynx became affected and she lost her voice.

Her lungs were afflicted and she had to give up all sport - a blow for the keen sprinter and netball player.

She was wheelchair-confined for nine months and the future looked bleak.

But then Rachel, from Caerphilly, South Wales, was referred to a special vasculitis clinic in Birmingham.

Despite an exhausting four-hour round trip Rachel started to improve.

She managed to hold down a post at her local job centre and over the years went in and out of remission.

Three years ago she met her partner, Jason, and was surprised to learn that, at the age of 30, she was pregnant.

"Every partner I met I told them that I would not be able to have children, but deep in my heart of hearts I hoped that I would.

"When Dylan did arrive he was a miracle."

Risks

Consultant rheumatologist Dr David Carruthers told her she faced serious risks continuing with her pregnancy.

Over the next nine months she spent much time going in and out of hospital.

Her weight fell from eight-and-a-half stone to seven stone.

Rachel had been told that because of her lung problems that she would have to have an early Caesarean.

But Dylan decided to make an appearance nearly two months early and was born weighing just 4lbs 9oz.

Stable

Rachel, whose condition is currently stable, works two days a week and spends the rest of the time with her 'miracle' baby, now two-and-a-half.

She says she owes it to him not to try for a second baby and put her body under any more - potentially fatal - stress.

"I did not bring him into this world to go without a mum. I would put myself on the line, but I would not risk depriving him."

A spokesman for the Arthritis Research Campaign, which is running a five-year clinical trial investigating treatments for vasculitis, said that until 30 years ago a diagnosis of primary systemic vasculitis would have meant almost certain death.

Just 10% of people with severe symptoms lived for more than two years after diagnosis.

But she said that better treatment meant the future looked brighter for patients like Rachel.

Diagnosis problems

Dr David Carruthers agreed and said that getting the initial diagnosis was often one of the biggest problems.

"Some forms of vasculitis are very difficult to diagnose because of the broad spectrum of symptoms.

"Inflammation of the blood vessels can lead to many different problems which depend on the size and location of the vessel involved.

"If inflamed vessels are in the lining of the joint it can lead to inflammatory arthritis.

"If blood vessels in the lungs are affected, patients can get breathless and cough up blood."

Experts believe their next challenge is to find drugs which are as effective but less toxic than the cyclophophamide which caused Rachel's infertility problems.

Various trials and clinical studies are under way.




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