Live Life with Strength: Lung disease patients turn to music that embody the spirit of optimism

To raise awareness on Pulmonary Fibrosis, members of Scleroderma Awareness Philippines (SAP) and Philippine Society for Orphan Disorders (PSOD), supported by Boehringer Ingelheim (Philippines) Inc., came together for the “Live Life with Strength” launch event. This activity served as an avenue for the patient groups to participate in community building and networking, as well as benefit from health lectures led by medical partners. Present also during the event are the Philippine Alliance of Patient Organizations (PAPO) and the Philippine Rheumatology Association (PRA). Both delivered messages of support to the patients highlighting the importance of seeking healthcare to manage their conditions and the essence of coming together as a community as a source of strength and emotional support.

Held in ​​Seda Residences in Makati, the event was joined by Dr. Mae Campomanes, Chair for the Council on Occupational and Interstitial Lung Diseases, Philippine College of Chest Physicians. Dr. Campomanes shed light on Interstitial Lung Diseases (ILD) and pulmonary fibrosis, allowing patients to understand their condition better and offer management solutions and treatment plans.

“This Pulmonary Fibrosis Awareness Month is an opportune time for us to come together and understand how we can rise above lung diseases. We aim to bolster public health by informing patients of early diagnosis, lung disease prevention, and the best of lung care practices,” said Dr. Campomanes.

 

 

Pulmonary Fibrosis, is a type of ILD, a rare disease, caused by inflammation and scarring of the tiny air sacs in the lungs called alveoli. This scarring leads to the thickening of the lung tissue, making it difficult to breathe and absorb the oxygen into the bloodstream. Common symptoms of Pulmonary Fibrosis are dry cough, fatigue, weakness, unexplained weight loss, and shortness of breath.[1]

To date, the available medications and therapies for pulmonary fibrosis are for the prevention of further deterioration of the condition and for the alleviation of symptoms to improve quality of life.

Living life with strength and hope

Running in its second year, Live Life with Strength is a regional patient community campaign that aims to help patients living with pulmonary fibrosis and ILD in their battle against the disease. One of its programs includes singing therapy sessions, which is becoming a popular form of pulmonary rehabilitation. Singing requires deep inhalation followed by long, controlled exhalation, which is very similar to the breathing techniques used to educate patients with breathing issues.[2]

As part of the program, members of the SAP and PSOD came together and participated in a series of singing therapy sessions to produce an original song and music video embodying the spirit of optimism and resilience. The program and the song not only provided them vocal therapy, but singing together has helped them with lung health, social support, and quality of life.

“Masaya ako dahil nakabalik ako ulit sa pagkanta. Bago ako nagkasakit, ito na talaga ang passion ko. Hindi ko naisip na kaya ko pa pala ulit gumawa ng musika, kahit hingal at hirap huminga. Dahil sa aming collaboration ng kapwa kong patients, mas lalo akong tumatag at nagkaron ng pag-asa na mabuhay nang malakas at masaya,” shared Marissa Pagtalunan, an ILD patient from SAP who shared her testimony.

In celebration of Pulmonary Fibrosis Awareness Month, members of Scleroderma Awareness Philippines (SAP) and Philippine Society for Orphan Disorders (PSOD), supported by Boehringer Ingelheim (Philippines) Inc., launched the Tagalog version of the original song and music video of Live Life with Strength.

Boehringer Ingelheim (Philippines) Inc., is a staunch supporter of lung wellness and partner of patients with lung diseases. “We put forth a multidisciplinary approach for diagnosing and treating ILD and Pulmonary Fibrosis. This month, our focus is to spread awareness so patients can have more hope and higher chances for a better quality of life,” said Dr. Greta Cortez, Head of Medicine for Boehringer Ingelheim (Philippines), Inc.

Full video of the song “Live Life with Strength” translated in Filipino can be viewed through the pages of SAP here and PSOD here. Video of the regional Live Life with Strength documentary video can be viewed here.

[1] Pulmonary fibrosis in the context of ILDs is discussed for instance in: Wells AU, Brown KK, Flaherty KR et al. Eur Respir J 2018;51, and in: Travis WD et al. Am J Respir Crit Care Med 2013:188(6):733–48

[2] Singing for Pulmonary Rehab https://www.aarc.org/nn18-singing-for-pulmonary-rehab/