For many people the need for a life saving transplant develops unnoticed over a prolonged period of time. In medical terms they remain 'asymptomatic' - this means they do not necessarily show any symptoms of an illness or medical condition at the very early stages of their conditon. They never expect that their journey through life will only be sustained by a life promoting transplant operation. That was certainly true for me and for Justine Laymond pictured here campaigning to raise organ donation awareness with the 'Eastenders' BBC programme team.

For sufferers of Cystic Fibrosis (CF), however, the symptoms may become apparent at birth. CF patients might be able to lead a ‘normal’ life for many years, but for many the need for a double lung transplant becomes a reality in their teenage years. CF is one of the most common lung diseases in young children. Justine's lung condition was caused by a much rarer condition.

Lymphangioleiomyomatosis(LAM) is a rare lung condition that affects a certain type of muscle cell and only occurs in women. It affects around one woman in a million; just over 60 in the UK are known to have it. It appears to occur world-wide and is equally rare in other countries. So for Justine Laymond the experience of being diagnosed with this highly rare condition at the age of 32 must have come as a devastating shock. Justine’s website shows her to have been a very fit and active person up until her twenties. [Justine's web link]

It is very kind of her to allow me to refer to her journey into a double lung transplant. In the talks I do in schools and colleges Justine is a very powerful example of how the need for a transplant can hit a person in the most unpredictable manner. The mostly teenage audiences can identify with Justine’s story because she was so typical of their experience of life before she was struck with LAM.

Despite her passion for burgers Justine was a very athletic and dynamic person. ‘Vivacious’ seems to be an understatement in terms of describing her approach to life. She loves dance and keep fit. She modelled for L’Oreal in addition to being a children’s entertainer as well as working in a fitness centre. She crammed a great deal into her life despite experiencing two lung collapses in her early twenties.

It was not until April 2005 that Justine was diagnosed with LAM at the age of 32. By this stage her breathlessness was so bad Justine had to be on oxygen 24 hours a day. She was placed on the critical list for a lung transplant which made her a super urgent case. For so many lung patients listed for a transplant the challenge is daunting. I recommend that you read Justine’s blog which can be found on her website and blog.[Justine's blog link] By July 2006 Justine had successfully received her double lung transplant.

Her journey captures all the 'highs' and 'lows' of waiting for a transplant. The distress to family and friends is so hard to describe. The anxiety for all concerned can be overwhelming waiting for an elusive organ donation. Fewer than 600 deceased 'heart beating' donors would have been able to donate their lungs to Justine during the 12 months she was on the waiting list. During this period 271 other patients were waitng for a lung transplant (either single or double) and 123 procedures were carried out. Tragically 49 people died waiting and a further 20 people were removed from the list presumably because they had become too ill for the operation. ('Heart beating' in this context means that the donor would have been diagnosed as brain stem dead and ventilated mechanically. Very few lung donations come from non heart beating, cardiac dead donors.)

This is what Justine has to say about herself. Her desire for life is so infectious!

"I am very lucky to be alive after a double-lung transplant in July 2006. I suffered the rarest lung disease called - Lymphangioleiomyomatosis (Lam). My illness never got me down even though there were very hard times. I just kept fighting for my life and trying to breathe each time my lung collapsed (total 15 times).

I used to be on 24 hr oxygen to help me breathe and also wheelchair bound. At one stage I ended up on life support (coma) for many weeks, and having to learn how to walk again with a Zimmer frame (no joke) - and start to re-build my life/confidence/strength up. I am a very positive individual and I want to enjoy my life with the extension this transplant has given me..WOOHOO!!!!"

Justine is training hard for the British Transplant Games which are to be held in Coventry this year. I look forward to meeting up with you there Justine! Keep up the campaigning in the meantime.

The Transplant Games will take place at Warwick University between Tursday 30th July and Sunday 2nd August. More details about the Transplant Games can be found at the TSUK website [Transplant Games web link]

About LAM

The following information comes from the British Lung Foundation website. [British Lung Foundation web link]

The average age of onset of LAM in people in the United Kingdom is 34. It nearly always starts before the menopause. When, very rarely, it has been diagnosed after the menopause, it has usually been in women taking hormone replacement therapy (HRT). LAM mainly affects the lungs, where it causes an overgrowth of a certain type of cell (smooth muscle cell). This overgrowth occurs around the airways (breathing tubes), the blood vessels and the lymph vessels (a means of draining excess fluid from the lungs).

The cells lead to cysts developing in the lung and these may be seen on a chest x-ray and are shown very clearly on a CT scan of the lung. The main effects of LAM are in the lung but quite a few people also have a tumour in the kidneys and sometimes more than one; they are not malignant but can cause bleeding.

Fibroids may also be more common in people with LAM and lymph nodes may be enlarged in other parts of the body but they don't usually cause problems.

The name lymphangioleiomyomatosis reflects the different components of the disease. 'Lymph' and 'angio' refer to the lymph and blood vessels that are involved and 'leiomyo' refers to the smooth muscle. More than 82 people with LAM have had a lung transplant in the UK and the outcome appears to be similar to people who have had a lung transplant for other conditions.