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For people living with interstitial lung disease, the burden of their diagnosis may feel, at times, overwhelming and isolating. An umbrella term that refers to a category of more than 200 types of rare and potentially serious lung diseases that can cause scarring of the lungs, interstitial lung disease may present a physical, mental, and emotional burden that can affect patients and extend to caregivers, too.
It’s a reality that Vera-who has been a caregiver for her younger sister Cheryl for more than 20 years-knows all too well. Vera always had a special bond with her sister, but their relationship took on an even greater meaning in 2001 after Cheryl was diagnosed with sarcoidosis, a condition which causes inflammation throughout the body-often including the lungs-and can lead to interstitial lung disease.
Vera has been a “constant presence” in Cheryl’s life throughout some of her most difficult moments. But there was one moment, in particular, when Cheryl says she came to fully realize the impact that her diagnosis had on her older sister.
“I remember my surgeon and I were discussing my options. I was handling the conversation casually, and I looked over at my sister, and she was just sobbing. She was taking it all in and grieving over me,” Cheryl recalls. “It made me realize that this journey, as hard as it is, isn’t just difficult for us [patients]. It’s difficult for those who share it with us, too.”
“I was so emotional. Just to see your younger sister, hearing that she might pass away…it took so much from me because she is my best friend. I wasn’t sleeping. I was worrying about her,” says Vera.
Vera’s experience is not unique. Research shows that feelings of depression and anxiety may occur in people living with interstitial lung disease and can even affect loved ones and caregivers, too. This can take a toll and an increasing number of caregivers say their role has impacted their own health.[1] For Vera, music and song have been critical in helping her cope with the emotional burden that caregiving can have.
“There were times that Cheryl was really sick and couldn’t really get around. I would get into bed and lay right next to her, and I would sing to her,” she says. “I rely on music to help navigate the ups and downs of this journey. It’s something I use to support my sister, but it’s also something I use to motivate and inspire myself.”
Inspired by stories like Vera and Cheryl’s and the potential impact that music and breathing can have, Boehringer Ingelheim recently introduced Tune In To Lung Health®, a program designed to raise awareness for interstitial lung disease and bring to life how music and breathing can help people cope with the mental, emotional, and physical burden of this disease.
The program features New York Yankees legend Bernie Williams, who lost his father to idiopathic pulmonary fibrosis, one of the most common forms of interstitial lung disease. The Latin Grammy nominee speaks openly about how important music was for him and his family following their loss.
“Music played a critical role in helping me cope with the loss of my father. I was listening to a lot of the music that he used to listen to when he was growing up, and I used that as a way to feel connected to him even after he passed,” says Bernie.
For Vera, Bernie, and others caring for a loved one with interstitial lung disease, music can be an outlet to cope with the stress of caregiving. Visit www.TuneInToLungHealth.com to learn more about interstitial lung disease, listen to curated streaming playlists from the ILD community, and hear from those affected by this disease, including Vera, Cheryl, and Bernie.
[1] National Alliance for Caregiving, AARP. Caregiving in the United States 2020. AARP. https://www.aarp.org/ppi/info-2020/caregiving-in-the-united-states.html. Published May 14, 2020. Accessed September 30, 2022.
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