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Loyal Customer fights back Rare Lung Disease with Race

Louise Robey of West Malling near Maidstone, a keen runner and mother of two, was recently diagnosed with a rare lung disease called Lymphangioleiomyomatosis (LAM). She is now using her love of running to raise funds for this under-researched disease, which progressively destroys lung tissue and function.


Pictured above: Louise (centre) with sister Emma (left) and mum Lynn (right)

The Symptoms Start

Louise, 38, is married to Colin and is a full-time mum to Isabelle, 9 and Harry, 7. She has always been a keen runner but in 2012 started struggling with her breathing.
“Three years ago, I was running 5K three times a week with a group of school mums. I noticed that I really struggled with my breathing but always managed to finish the 5K,” said Louise.
“I couldn’t work it out as I’d always been fit and some of the not so fit mums were way ahead of me!
“I eventually stopped running as it became too hard, and over the space of a year or so my breathlessness got a lot worse – even climbing the stairs left me hugely breathless.”

Being Diagnosed

After seeing her doctor who administered an X-ray and CT scan, she was sent for a lung biopsy with Professor Athol Wells, a respiratory conditions consultant at the Royal Brompton Hospital. The biopsy confirmed her condition to be LAM and found that she was also hypersensitive to particles in the environment.
She was prescribed steroids and Rapamycin, a drug that can slow the rate of loss of lung function.
“Thankfully my LAM is now stable and hasn’t progressed in the last year… phew! I now wear oxygen when mobilising so this helps with the breathlessness. I look a little bit like I’m going out scuba diving!”

The Disease Itself

This disease occurs almost exclusively in women and progressively destroys the lung tissue, wearing away the lung function and can affect other organs.
It’s one of the world’s rarest diseases and there is currently no cure. Effective treatment is limited, with the primary treatment being Rapamycin or a lung transplant.
The cause is still unknown although it is thought to be connected to hormones as it almost exclusively affects women of childbearing age.

Racing for Research

Louise is organising a sponsored ‘Race for LAM’ at Leybourne Lakes Country Park on May 9th to raise money for LAM Action, a small charity that provides support to sufferers and their families. It also works to educate health professionals about the little known disease and push for more advanced research into the disease.
She is hoping to encourage up to 100 other competitors to enter, either walking or running the option of 5k or 10k race along with her. A selection of prizes are being offered including one for the person who raises the most money overall.

Getting Involved

Here at Ream we have already donated £50 to Louise’s Just Giving Page and would encourage others to do the same as every little helps.
“As you can imagine I want to raise as much money as possible for LAM research in the hope that one day they will find a cure. As this is such a rare disease we have so little funding to help finance research so anything people could do to help we would appreciate so much.”
If you’re interested in taking part in the race, want more information or wish to donate, go to: