Rare diseases often leave those diagnosed feeling isolated, misunderstood, and searching for answers. Cheryl and Vera, two sisters bound by love and resilience, have not only faced these challenges head-on but have also turned their journey into a beacon of hope for others. Cheryl lives with sarcoidosis and interstitial lung disease (ILD), while Vera has taken on the role of her caregiver and biggest advocate.
Through personal struggles, medical battles, and unwavering support, the sisters have become vocal champions for lung health awareness. Their story is one of strength, laughter, and advocacy, proving that even on the hardest days, hope prevails.
Cheryl’s Diagnosis: A Life-Changing Journey
Cheryl was diagnosed with sarcoidosis in 2001, an inflammatory disease that primarily affects the lungs. However, her journey to diagnosis was far from straightforward.
“I was going from doctor to doctor to try to get the right treatments. I thought I was doing better, but actually, I wasn’t. Little did I know, everything was just going downhill,” Cheryl recalls.
Before she could see her specialist for a follow-up appointment, she collapsed at home and was rushed to the hospital.
“That’s when I was also diagnosed with interstitial lung disease,” she says.
According to Lungs & You, interstital lung disease is “a serious lung disease that is caused by many different factors, including autoimmune diseases, exposure to harmful substances, like asbestos or silica dust, and medications, as well as many unknown factors.”
Her condition became critical.
“I was in the hospital for 45 days. The doctors didn’t think I was going to make it. I needed a double lung transplant. I had fungus and holes in my lungs, and I was just really sick.”
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The Role of a Caregiver: Vera’s Unwavering Support
Seeing a loved one battle a serious illness is heartbreaking, but Vera was determined to be Cheryl’s rock.
“The journey has been difficult, but then it’s been rewarding too,” Vera shares. “It’s difficult when you see your younger sister going through something devastating. I remember one time I was at work, and I called my mom, and I was like, ‘Mommy, I think she’s gonna die.’ That’s how bad it was.”
Despite the emotional toll, Vera devoted herself to Cheryl’s care.
“When she’s in the hospital, I’m in the hospital. I go from work straight to the hospital, sometimes until 1 o’clock in the morning. I wanted to hear what the doctors were saying, to make sure she was taken care of the correct way.”
Yet, caregiving took a toll on Vera’s own health.
“I was giving myself away so I could help Cheryl. I wasn’t even going to my own doctor’s appointments,” she admits.
She emphasizes that caregivers must prioritize self-care.
“You can’t pour from an empty cup. You have to take time for yourself—exercise, do things you enjoy, and find joy even in difficult moments,” Vera adds.
Finding Strength in Transparency and Community
Living with a rare disease is not just a physical battle—it’s an emotional and mental struggle as well. Cheryl believes in sharing both the good and bad days to help others.
“I don’t only put out the good stories. I share everything—the good and the bad—because people need to know that it’s not always good days,” Cheryl says.
Through social media, she connected with a woman who was newly diagnosed with ILD.
“We were going back and forth, and then we finally spoke on the phone. I was able to give her encouragement and share what I’ve been through,” she explains. “One thing I always tell people is, I’m not a doctor, so I can’t give medical advice, but I can share my journey and remind them that they’re not alone.”
For Cheryl, Rare Disease Day isn’t just once a year—it’s every day.
“I advocate every single day. I try to help someone every single day.”
Advocacy Through the Tune In to Lung Health Program
Cheryl and Vera have become active advocates through the Tune In to Lung Health program, which focuses on lung disease awareness and education.
“This program is very dear to me. I always knew music was a big part of my life, but I didn’t realize how much it could help with breathing and mental health,” Cheryl shares.
For Vera, advocacy is about reaching others.
“If I can help just one caregiver, it’s worth it. That’s why I talk about Cheryl’s condition at work. One day, my minister told me his daughter had just been diagnosed with sarcoidosis. I was able to connect them with Cheryl for support. That’s the power of awareness.”
Through this initiative, they’ve helped others find support, education, and a sense of community.
“It’s not just about education—it’s about showing people that they’re not alone,” Cheryl says.
Lessons for Caregivers and Patients
For those living with a rare disease, Cheryl has one powerful message:
“You are not alone. You will have your ups and downs, but find a good support system. Find organizations that educate you and bring awareness. Once you find that community, you can live a happier life.”
Vera encourages caregivers to take care of themselves, too.
“Try to find laughter in the situation. Laughter is good for the soul,” she says.
She recalls a moment when Cheryl was in the hospital on her birthday:
“I put a birthday banner on her IV pole, gave her a crown, and the nurses brought her a cake. Even in that difficult time, we found joy. She walked me to the door with her IV, looking all sad, saying, ‘This is my birthday, and you’re leaving?’ We laughed so much!”
Vera wants caregivers to remember that their role is important, but it’s not their only identity.
“You might be a caregiver, but you’re also a friend, a mother, a wife, a baker—don’t lose sight of who you are.”
Cheryl adds:
“I may have sarcoidosis and ILD, but they don’t have me. They don’t define who I am. Yes, there are bad days where I can’t get out of bed, and that’s okay. But I don’t stay down. Be a fighter. Don’t let it define you.”
Final Thoughts: Hope, Advocacy, and Strength
Cheryl and Vera’s journey is one of love, resilience, and advocacy. They have turned their pain into purpose, helping others navigate life with a rare disease.
“Living with a rare disease is tough, but you can’t let it define you,” Cheryl says. “Find a support system, connect with others, and advocate for yourself. You’re not alone.”
And for caregivers, Vera offers this final piece of advice:
“Take care of yourself. You can’t help someone else if you’re running on empty. Find joy, laughter, and purpose in the journey.”
As we commemorate Disease Day, their message is clear:
“Educate yourself, raise awareness, and advocate for better healthcare policies. Support organizations that bring awareness to rare diseases. Use your voice. Every story matters.”
For more information on idiopathic pulmonary fibrosis and interstitial lung diseases, and to learn how you can get involved, visit TuneInToLungHealth.com.
