A friend sent me this article and I thought you might like to read it. I can't help but wonder if Lucy would have been diagnosed much earlier if she lived in the US and had access to our medical care system.

Carlene

Lucy, the girl with kaleidoscope eyes who inspired the Beatles... and her final, tragic battle.

Remember the song, "Lucy in the Sky With Diamonds". People always thought the Beatles wrote this song when they were all tripped out with LSD, but I had heard the story that it was from a picture that John Lennon's kid brought home from school. Interesting story about Lucy.

http://wwwdailymail.co.uk/health/chat/article-1217848/Lucy-girl-kaleidoscope-eyes-inspired-Beatles--final-tragic-battle.html

Here's the article, for your convenience:

Lucy, the girl with kaleidoscope eyes who inspired the Beatles... and her final, tragic battle

By Bonnie Estridge
Last updated at 9:43 PM on 03rd October 2009

The woman who opened the front door had taken a while to get there. Although Lucy Vodden was clearly frail beyond her years, her hair sparse and face puffy from medication, when she smiled it was easy to see the happy little girl that she once was - the little girl who ran around with Julian Lennon at nursery school.

Lucy was only 46 years old when she died last week from an infection that was a complication of lupus, the disease she had courageously battled for 15 years.

Housebound and extremely unwell, it happened after she had mustered up the energy to enjoy the first break she and her husband Ross, an environmental health officer, had taken in eight years.

Tragic: Lucy Vodden died last week aged 46

John Lennon in 1964, before he penned the famous hit inspired by Lucy

She gave her interview to The Mail on Sunday in a bid to publicise the autoimmune disease that, in her case, had taken so long to diagnose and so subsequently had been harder for doctors to treat.

Visibly exhausted, Lucy was determined to finish the interview so that others would learn from her experience the importance of early diagnosis.

She had made the news earlier this year when it was revealed that she was the 'Lucy' in John Lennon's classic song Lucy In The Sky With Diamonds.

His four-year-old son Julian had drawn a magical picture of his playmate surrounded by sparkling stars while at Heath House nursery school in Weybridge, Surrey, and when he told his father his picture's title, John was obviously inspired.

'I don't know why I called it that,' Julian said later, 'but I obviously had an affection for Lucy. I used to show Dad everything I'd built or painted at school and this one sparked off the idea for a song.'

And while Julian grew up to be a singer and songwriter and now lives in France, and Lucy trained as a special needs nursery teacher and worked with autistic children in Surbiton, they kept in touch.

Lucy, however, would endure a life dogged by years of unexplained ill health that cut short her career and robbed her of a chance to become a mother.

'I feel permanently exhausted,' she told me. 'Any activity - such as emptying the dishwasher - feels as if it has caused my temperature to shoot up. The steroids make me bloated and some days I am completely swollen. I usually don't get depressed and I keep coping but it's difficult because I've always cared about my appearance.

'I found it very hard having the spotlight on me recently. But if something good can come out of the publicity - if it can raise awareness so that any sufferers may get diagnosed earlier - then I'll be happy.'

For it was only five years ago that Lucy finally found out why she had been sick for so long, and was diagnosed with lupus.

Lupus is common and affects one in 1,000 people in the UK, mainly women between the ages of 15 and 50.

The condition often remains undiagnosed or is mistaken for ME (Chronic Fatigue Syndrome), rheumatoid arthritis or MS.

But delay in diagnosis is serious, as lupus can affect any part of the body and major organs can be damaged irreversibly before treatment has been started.

In lupus (the Latin word for wolf, from one of the tell-tale signs, a butterfly-shaped facial rash once thought to resemble a wolf's bite) the immune system attacks the body and can cause damage to the kidneys, brain, heart and lungs.

While incurable, if treated early there is a good chance that it will go into remission, lessening the risk of future complications.

After her diagnosis, Lucy remembered the day that a large bouquet of flowers arrived at her home in Surbiton. They were from Julian who, when he heard that his 'girl with kaleidoscope eyes' was ill, sent her garden centre gift vouchers as she loved growing plants and took much solace in her garden.

'It was lovely that Julian sent such a sweet note saying how sorry he was to hear I was ill. It really cheered me up,' she said, beaming at the memory.

'My illness has had an effect on my memory but I still vividly remember Kenwood, the Lennon house at St George's Hill in Weybridge where there was a lovely swimming pool.

Inspiration: The young Lucy

'As children, Julian and I ran around like mad things most of the time, he was full of fun and always smiling when we were at our nursery school.

'I remember him bringing an enormous teddy bear into class and then refusing to take it home - so I brought my panda in to keep it company.

'His mum Cynthia was stunning and I remember thinking how lovely her hair was,' she said, 'but I also remember being scared of John, although I have no idea why. Maybe it was because he was so famous.

'When The Beatles' Sergeant Pepper album came out I remember that I preferred the track Good Morning with the sound of the cockerel crowing to Lucy In The Sky With Diamonds. In fact, when I first saw that now famous picture - which is supposed to be worth about £250,000 - I thought I looked like an alien!

'I can't remember Julian drawing me. I don't know where the picture is now - I heard that a record company boss had it in his office but that may be just hearsay.

'The last time I saw Julian was when we were in our early 20s and he asked me, "So how's Lucy in the sky getting on?"'

As it turned out - not well. Lucy had started to suffer from a chronic inflammatory skin disorder, diagnosed as psoriasis.

'In 1994, two years before I married Ross, I developed itching, scaling and very painful skin,' she said. 'It has a genetic component and there was psoriasis on both sides of my family, yet I seemed to have it particularly badly.

'It is a chronic condition, which does relapse, but I was in and out of hospital. Eventually I had to give up my job, which was heartbreaking.'

Lucy then faced another dilemma. The immuno-suppressives needed to treat the psoriasis have been linked with birth defects. Because she and Ross had 'always dreamed of having children', Lucy chose not to take the drugs, instead bravely putting up with the psoriasis until suddenly, in 2001, she went into remission.

'I felt much better for the first time in years,' she said, 'and we wanted to start a family so I talked to a gynaecologist at my local hospital in Kingston upon Thames about having fertility treatment. He said my ovaries would need to be "fired up" with the hormone oestrogen due to my age and health problems.'

She was thrilled to become pregnant within months but miscarried before her first scan at 12 weeks.

'Afterwards I felt very strange, as though I had constant flu,' she sighed. 'My joints ached, I felt weak and tired all the time.

'I later learned that the worst thing you can do to someone with undiagnosed lupus is to give them oestrogen because the hormone can trigger the disease but, of course, at the time no one realised I had it.'

What Lucy was also unaware of was that she was suffering from antiphosopholipid syndrome, also known as Hughes syndrome, a condition that can be a complication of lupus.

Her symptoms prompted her GP to send her to Professor Graham Hughes, head of The London Lupus Centre (www.thelondonlupuscentre.co.uk), who gave her the diagnosis of lupus. It was Prof Hughes who had discovered the link between lupus and sticky blood syndrome in 1983.

He put Lucy on a course of steroids which worked incredibly quickly. 'I felt fantastic because the crippling tiredness disappeared,' she said.

'I could clean the house, I was bounding with energy - but unfortunately this new lease of life only lasted for four weeks and then I developed a rash on my face, my hair started falling out and my joints swelled.

'The steroids had been masking what was really going on in my body. I became a recluse because I didn't want people to see me looking so ill.'

Drawn together: Julian Lennon as a toddler with parents John and Cynthia

Lucy decided having children was now out of the question. Having Hughes syndrome meant she had an increased tendency to form clots in blood vessels (thromboses) and her blood would be far thicker and stickier than was recommended for a healthy pregnancy.

'This is why so many women with the disease have multiple miscarriages,' Lucy said.

'Prof Hughes told me that a number of lupus sufferers had no idea that they had the disease because their symptoms may have been in the early stages - as mine were - and had gone undiagnosed.' Lucy paused.

'In the end I felt it was too dangerous to try for children,' she said. 'Ross and I would have happily adopted or fostered but my health was far too fragile.'

Prof Hughes says: 'So much has changed in the treatment of lupus that the majority of patients are able to lead a perfectly normal, active life and live a normal lifespan.

'Lupus tends to arise in families where there are other autoimmune disorders, such as thyroid problems or coeliac disease, but the female immune system appears to be more susceptible than the male.

'In some patients lupus is so mild that no medication is needed and in others everyday anti-inflammatory drugs give control. For others, steroids are prescribed and nonsteroidal drugs are also proving effective in controlling the illness. But a few patients need anti-cancer [chemotherapy] drugs to manage their condition.'

Prof Hughes wants to raise awareness about lupus and says there are clinical pointers that could lead to an early diagnosis, using simple blood tests.

'If, say, a 20-year-old female presented with prolonged fatigue or what they might describe as prolonged glandular fever, then this could make us sufficiently suspicious to test for lupus.'

About one-in-five lupus patients also suffers from a tendency to excess blood clotting or Hughes syndrome. This can affect any organ, though the brain and, in pregnancy, the placenta are particularly vulnerable.

'Thus headaches ,especially migraine, memory problems and balance difficulties are common complaints,' says Prof Hughes.

'Hughes syndrome is the most common treatable cause of recurrent miscarriage. I would test any woman who has suffered two or more miscarriages: a simple blood test could prevent so much more tragedy.'

Although it was too late for Lucy to become a mother, Prof Hughes gives hope to other women.

'We have come a long way,' he says. 'The pregnancy success rate in Hughes syndrome has increased from 15 per cent 20 years ago, to more than 90 per cent today.'

And sufferers will always be so grateful to Lucy. She raised the profile of this disease - not for herself, but simply to help others.

Lucy in the sky with diamonds - Julian Lennon

Lucy in the sky: The now famous - and valuable - picture Julian Lennon painted of his nursery school playmate

Symptoms to watch out for

Lupus can be triggered by hormonal changes such as puberty, the Pill and pregnancy. Sunlight, trauma or a prolonged course of some medications may also activate it.
There may be a genetic link - lupus is often triggered in those where there is a family history of the disease and/or other immune system illnesses such as arthritis, MS and rheumatism.
Anyone with suspected lupus should have blood tests.
Symptoms include: joint/muscle aches and pains; a rash over the cheeks; extreme fatigue and weakness; rashes from sunlight; flu-like symptoms; headaches/ migraines; kidney problems; hair loss; swollen glands.
Hughes syndrome is characterised by recurrent miscarriage, headaches and a tendency to blood clots (eg, DVT).

www.hughes-syndrome.org.uk; www.lupusuk.org.uk; www.lupus.org.uk