Wednesday, 1 June 2011

LAM Awareness Day.

Today is Worldwide LAM awareness day.

LAM stands for Lymphangioleiomyomatosis, and is an extremely rare disease which only affects women, and usually shows itself in women of child-bearing age.

LAM primarily attacks the lungs, destroying lung tissue and leaving sufferers increasingly more breathless. The disease causes excessive growth of smooth muscle, which progressively invades the airways, and destroys healthy tissue, preventing the lungs from providing oxygen, eroding lung function, and making breathing a daily battle.

A common symptom of LAM is pneumathoraces, or collapsed lungs, and it is often when the patient reaches this stage that the disease is diagnosed. LAM is not an inherited disease and the cause is currently unknown. There is currently no cure for LAM and very little treatment, besides a lung transplant, for severe cases.

This is an extract from a piece written by LAM patient Gill Hollis, in 2010:

My lung problems began in 1987, when I was in my early twenties. I’d always been fit and healthy, so it was a shock when I suffered three lung collapses in six weeks. Five years later, after some more lung problems, I was told I had the chronic disease LAM. Oestrogen is thought to play a part in LAM, so I was advised not to have children. I was told that my prognosis was uncertain, but that there was no treatment and no cure. It was a devastating diagnosis.

The disease progressed through slow attrition; I grew increasingly breathless, and required more surgery after further lung collapses. It was in 1995, before another operation, that the possibility of a transplant was first raised with me. This was fantastic news; finally, I was given some hope that my future might hold something other than the ultimately terminal march of the disease.

In the meantime, I was being forced to give up my favourite activities one by one. By summer 2003, I was on oxygen 24 hours a day; eating and sleeping were difficult; and showering and dressing in the morning took hours. I’m naturally an energetic and sociable person, but was unable to be either.

I was finally put on the transplant list in July 2003. By then, my physical symptoms were at least matched by the psychological impact of my situation; I was deteriorating rapidly, and was terrified that my call would not come in time.

I was lucky. In February 2004, I received a new left lung. In general, the operation went well and thanks to my donor, her family, the team at the Freeman Hospital and the support of my family and friends, my life since then has been absolutely transformed. Leaving hospital was extremely emotional – I felt like a new woman.

Of course, there have been setbacks, but the benefits have far outweighed these problems. My quality of life is excellent. It is wonderful to live a normal life again: going out for supper with friends, working, walking to the cinema, going on holiday, playing with my young nephews. I even appreciate being able to do my own supermarket shopping!

I am able to indulge my love of sport again too; since my transplant I’ve been kayaking, skiing and golfing, and have even learnt to rollerblade. Earlier this year, my husband and I travelled to New Zealand, where we completed the arduous one-day trek, the Tongariro Crossing. In summary, I am a participant again, rather than a frustrated spectator.

Soon I will celebrate the seventh anniversary of my transplant. I wrote to my donor family soon after my transplant; it was the most difficult letter I’ve ever had to write, but also the most important. I can’t thank them enough, but hope that my letter – and those from other people who benefited from their brave decision – helped them in their loss.

To find out more about LAM visit



gusDon said...

A nice note about LAM disease information, I can get good information there. I myself do not know what exactly the disease. My country rarely publish them...

feiane (fe-yan) said...

thanks for posting.... this is very informative and will lead to awareness... staying in fit, knowledgeale and will power is our key to fight against all those diseases.... I've been a product specialist for years of certain meds for cancer, renal anemia, leukemia and immunosuppresant for kidney transplant i know that knowledge is the key for us to understand. keep posting!om