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Lymphangioleiomyomatosis is devastating to those who suffer

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June 1 is Worldwide LAM Awareness Day, but LAM or better known to doctors and those who suffer from this devastating disease is Lymphangioleiomyomatosis. Never heard of it? Most people have not either, but for those diagnosed with this disease, they learn quickly.

One such person who was diagnosed is writer, Marie Lowe, who has had enough sadness in her life. After being the sole caregiver to her mother who recently passed from ovarian cancer, she now faces this diagnosis after never being a smoker, in fact, many of the victims of this disease never smoked. She is a runner who loves to mountain bike; she is now a victim of this devastating lung disease that could be robbing her of the things she loves.

Being a sufferer of Sarcoidosis, this writer can empathize with anyone who has any lung disease, but for the last month, it has been under control, after suffering a major exacerbation.

As for Lymphangioleiomyomatosis, victims are always women of childbearing age. This disease increases the amount of muscle cells which becomes the lining of the lungs, causing a thickening of the lungs and cysts to form taking up room in the lungs needed for air. Once this occurs, the victim has a difficult time breathing.

According to WebMD, no treatments have shown a cure for this disease, or even show improvement. Those affected find some relief by using inhaled bronchodilators such as albuterol or ipratropium can help open the airways, reducing shortness of breath, but only help some people. Because the disease affects only women, it is believed that estrogen plays a large part in the disease, but the actual cause is unknown. Because this disease is not recognized well enough to have the necessary funding the way cancer, diabetes, multiple sclerosis and other well known diseases have national prominence; a cure may be a long way down the road.

Pulmonary Lymphangioleiomyomatosis is progressive. As of this day, there is no known cure. Most of the women living with LAM experience a steady decline in lung function, with increased shortness of breath over time. Some women with the disease rapidly progress while others progress slowly: in some studies, nearly 90% of women were alive 10 years after diagnosis with LAM and the hope is that a cure will be found so those with this illness can live a full life.



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