Why am I doing this? 

A question I frequently ask myself whilst wading through the muddy hills of Kent on a Saturday morning.

My mother in law, Sandra Grantham, was diagnosed with LAM (Lymphangioleiomyomatosis) in the mid 80's and has lived, against the odds, with this debilitating and life changing condition ever since (she is now in her early 70's). She is one of the lucky ones.  LAM will usually kill within 10 years of diagnosis.  

Most people have never heard of LAM.  I hadn't before I met Sandra. It is incredibly rare with only 7 in a million women affected (and around 200 cases in the UK). Given its rarity it doesn’t attract any central funding and so research is entirely dependent on charity. The disease itself is a degenerative lung condition that almost exclusively impacts women, usually in the mid-20s to mid-30s age range. It usually kills, by slowly robbing the individual of the ability to transfer oxygen from the air into the bloodstream by destroying the internal surface of the lungs, and so increasingly putting stress on the cardio-vascularsystem. LAM is a progressive disease, but the rate at which it progresses varies considerably. 
Most women with LAM experience breathlessness, particularly on exertion, which eventually impacts their ability to perform normal, day-to-day tasks. Over time, many women require supplemental oxygen. Other symptoms of LAM may include a collapsed lung, chest pain, cough or fatigue. Women often go undiagnosed for years, and are frequently misdiagnosed with asthma, bronchitis or emphysema. 
Although research is ongoing, currently there is no cure for LAM and little effective treatment. For some women lung transplantation is their only means of survival. As it is so rare, women who are newly diagnosed are unlikely to know anything about LAM or have met anyone else with the disease.

So what does LAM Action do?

As the UK registered charity focussed on LAM, LAM Action plays a crucial role in helping to ease the sense of isolation experienced by women with LAM. They also ensure that accurate information about LAM is readily available; provide ongoing support to women with LAM and their families; foster strong links with the medical profession and other LAM organisations around the world; and raises funds for research.

Please help support this charity and give me some inspiration to carry on during what I am certain will be the longest morning of my life!!

Thank you for reading!

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