February 18, 2016

NTM: A little known lung disease

Merv Couper, NTM Patient, Woodvale, WA 

Nontuberculous mycobacterium (NTM) can be a serious chronic lung disease that can make patients very ill and damage their lungs. Dr Justin Waring, a respiratory specialist treating NTM patients in Perth, explains that the bacteria causing NTM lung infection is usually slow growing and the condition is difficult to diagnose, even for experienced doctors.

NTM is increasing worldwide, and with an ageing population, we can expect the condition to become more common. NTM especially affects women 50 years or older, of european and asian descent, and for reasons that are unknown, NTM patients are often slender, active women. It is also more common in warmer climates. NTM can be treated successfully over an 18 – 24 month period, and while some patients recover fully, sadly many do not.

What you can do to help regain your health The “NTM Info & Research” (NTMir) organisation in the USA exists to help NTM patients by providing support and information, as well as helping to facilitate research – see www.ntminfo.org. An Australian NTMir Support group has been formed, whose website www.ntmaustralia.com focuses on the needs of NTM patients in Australia.

NTM is a difficult disease to treat for both the medical professionals involved and the patient, but there is lot you can do help yourself. For some NTM patients, the disease can be overwhelming and difficult to come to terms with, while others who accept they have the disease, learn all they can about NTM and never give up searching for solutions always do best.

An example of a positive patient is Ellen, an American NTM patient whose journey has been difficult. Her lung problems began in 2005 at the age of 53 with random breathing problems, chest pain, intermittent coughing and dramatic weight loss. Getting properly diagnosed and treated was a lengthy process and eventually included three relapses, three rounds of treatment and the surgical loss of two lobes of her lungs. About 50 percent of NTM patients are cured, however, Ellen will probably be in the other half who will carry the infection and require periodic treatment for the rest of her life. In spite of this, Ellen does live a very active life with no short term or long term side effects. Ellen really demonstrates what is possible by taking control of her disease and making sure she does not allow the disease to get control of her. You might say she is an active participant in managing her health and takes advantage of the tools available to self-manage her condition.

The Australian NTM Support Group works tirelessly to help NTM patients gain control of their health with lots of tips and the best advice we have found from all over the world. The website www.ntmaustralia.com includes a section “Living with NTM” under the “Info” heading. Here you will find some golden rules to follow and some suggestions on how to get the most out of the visits to your doctor.

If you would like to speak to someone with experience of living with NTM, please call Merv Couper on 08 9409 4565.