Living with LAM
What would it be like to no longer be able to run, or simply carry the laundry upstairs, at 35 years old – and not know why?
Laura Bowers, a college professor of organic chemistry, first noticed that she was getting short of breath when she was pregnant. “Everyone told me that was completely normal.” But even after she gave birth her breathing didn’t improve, ever.
The scientist in Laura led her to push and push her doctors until, at last, she got her diagnosis. By this time her daughter was 6 years old, and she was 40. But it was not the diagnosis that any mother would want.
LAM is a progressive chronic lung disease found in young women. It literally steals in and takes your breath away. There is no cure.
It is rare; only around 4,000 women have been diagnosed to date worldwide (although doctors believe there are 30,000 to 50,000 women alive today who are either undiagnosed or misdiagnosed). On average, women endure 3 to 5 years from onset of symptoms before being properly diagnosed and treated. During this waiting period, irreversible lung damage occurs leaving many women with severe COPD and lung transplant as their only hope for survival.
I first met Laura a few months ago, her friend Heather had partnered with me in our business and had tied her Get Together to a fundraiser to help raise awareness for LAM. I joined the party via Skype. I could see Laura, her arms wrapped around her young daughter, in a room filled with friends, there to support her.
I met her again last month, we spent an afternoon together, Heather, Laura and I, in amongst a crowd, but also quite alone.
It’s very difficult to ask prying questions in interviews like this. But Laura’s attitude, knowledge and strength of purpose can give so much hope to anyone living with chronic disease. How does she deal with this as a mother?
As hard as it is to open up her private life to strangers, she tackles the question head on, with grace and elegant composure – only a small waver in the voice gives away her inner feelings. She is very brave.
“The diagnosis was devastating. But I had to stay positive. I thought, here I am, I have a 6-year-old daughter. I don’t want her to grow up without a mom – I have to do everything I can to stay healthy.
“So, I take an active approach, not only for my family but for myself. My disease is chronic and progressive but each day I try and push myself as much as I can, even knowing that things are going to continue to decline.
“We live healthily, eating fresh food, and exercise as much as possible – obviously I can’t run anymore, but walking is fantastic, as is yoga and pilates, and anything that can really get the heart-rate up.
“And, as a family, we live for every moment. We went to Paris last summer – carpe diem!”
I admire Laura so much. Her outlook is so smiley. She continues to laugh and move her hands a lot during the interview. I am not sure how I would cope in her shoes.
In fact, one of the hardest parts for Laura has been to share her story. “I found it most difficult – even as a teacher and an outgoing person – I had to step outside my comfort zone to talk about my condition publicly. But I knew it was just something I had to do to promote awareness.
“I just kept thinking how hard it could be for other sufferers to get a diagnosis. I was well educated and I had great health insurance – and it still took me that long to find out what was wrong.”
Laura decided to go back to pharmacy school and to use it to research everything she could to teach people about this disease.
Then one day, sitting with a group of girlfriends she came up with the idea of the ‘Balloon Challenge for LAM’, where one has to blow up as many balloons as you can and let them fly in 30 seconds (while your friends film you and laugh at your hilarious attempts) – until you are left as breathless as a LAM sufferer.
“If I can help just ONE woman to get diagnosed,” says Laura, “then my mission will have been a success. And talking about it openly is a great way to do that. We should never underestimate the power of girls talking to girls, spreading the news, helping each other, creating a network of support. If we can create awareness, we can empower people in the process”.