Living with Afib and Obstructive Sleep Apnea: A Conversation with Mellanie True Hills, Founder of StopAfib.org
- Apr 19
- 6 min read
Mellanie True Hills, founder and CEO of StopAfib.org, has been free of atrial fibrillation (afib) since 2005. She created StopAfib.org as a patient-to-patient resource to share what she and other atrial fibrillation patients have learned. The organization’s mission is to provide patients with the information and answers they need to take control of their afib and keep it from hijacking their lives. ASAP spoke with Mellanie to learn more about why she founded the organization, the importance of connecting with patients and creating a community of support, and her advice to others on living with afib and obstructive sleep apnea (OSA).
As the founder and CEO of StopAfib, please tell us why you founded the organization. What has connecting with other patients meant to you over the years?
This mission began after a procedure in 2005 left me afib-free. I was so thankful for this outcome, and motivated to help other Afib patients understand that they, too, have options. I launched StopAfib.org in April 2007 to give patients the tools, information, and confidence to get their afib under control.
The vision was simple: create a website with helpful resources. It quickly became something much bigger. It’s now an organization that is making a difference in people’s lives worldwide. We’re encouraging others to get their afib under control so that they can get back to doing the things they love.
StopAfib.org isn’t just a platform. It’s truly a labor of love to make a difference in the world and create a community where patients feel seen and supported. I tell other advocates all the time: “If you’re on the right mission, the universe will conspire to make it happen.”
How has your organization's approach to patient advocacy evolved over time?
When I founded StopAfib, our initial mission was education and awareness with the goal of helping people understand their options for managing, and in some cases eliminating afib. It then became clear that many people were living with undiagnosed afib, so we expanded our efforts to raise broader awareness.
Over time, our work has evolved to include a strong focus on policy and research. On the policy side, we prioritize working collaboratively from within the system to help influence outcomes that truly benefit patients. In 2009, I had the opportunity to testify before the U.S. Food and Drug Administration (FDA) at an advisory panel hearing for a new afib treatment. That experience led to ongoing collaboration, including supporting patient-facing resources and helping identify individuals that could serve on their panels during FDA advisory committee hearings.
Another significant evolution has been the establishment of our formal training program for advocates. We recruit and engage community members to support clinical trials and ensure patient perspective is represented. I also speak annually at the Global CardioVascular Clinical Trialists Forum (CVCT) in Washington, DC, about how organizations, whether academic institutions or industry, can and should involve patients in research from the very beginning. When patients are engaged early as partners, it leads to more meaningful research and better outcomes for everyone.
As a person living with both chronic conditions, what initially prompted you to seek a diagnosis for obstructive sleep apnea?
Although my procedure in 2005 left me afib-free, I have always been proactive about doing everything I can to keep it that way. Years ago, a routine workplace physical included a sleep study, which indicated that I didn’t have sleep apnea. But after launching StopAfib.org, I was immersed in so much research, and began to better understand the connection between afib, other arrhythmias, and obstructive sleep apnea.
That awareness prompted me to revisit the question with my doctor. I suspected that sleep apnea might have contributed to my afib, so I pursued it. In 2008, I underwent another sleep study, was diagnosed with sleep apnea, and began treatment with CPAP.
What do you think is the link between sleep apnea and afib?
I’ve long believed there’s a significant connection between sleep apnea and afib, and it’s something we’ve worked hard to bring more attention to at StopAfib.org. Through my involvement with the Patient-Centered Outcomes Research Institute (PCORI) and its PCORnet program, I had the opportunity to connect with researchers studying this link, including Dr. Susan Redline. And in 2015, she spoke at our patient conference and gave a presentation on the connection between afib and sleep apnea. This was a pivotal moment, and it was crucial that we begin educating our audiences.
Since then, the data has become even more compelling, and now we’re seeing statistics stating that up to 60-80% of those with afib also have sleep apnea. This is why education and screening are so important, and we have continued to educate our community.
We also hear it directly from patients. Many describe waking up in afib and wondering whether an apnea event (where breathing temporarily stops) may have triggered it. Physiologically, that’s possible: drops in oxygen and the body’s stress response, including adrenaline release, can create conditions that may contribute to an afib episode.
What’s clear is that diagnosing and treating sleep apnea can be an important part of managing afib and improving overall outcomes for patients.
Are there any gender differences you are aware of when it comes to the link between afib and sleep apnea?
From what we’ve seen, sleep apnea seems to be just as common in women with afib as it is in men. However, women are not diagnosed as quickly as men, but many women are persistent and seek a diagnosis until they finally get one.
We have also seen how important partners can be in identifying sleep apnea. We have seen on several occasions afib patients bringing their partners or spouses with them to our conferences, and it’s their partner that recognizes that the patient may have sleep apnea. This outside perspective can play a critical role in getting evaluated and treated.
Can you share some details on how you manage both chronic conditions?
I have been afib-free for more than 20 years, and I credit both my surgery and my commitment to treating my sleep apnea. In my experience, untreated or undertreated sleep apnea is a common reason afib can persist or return. I strongly believe that properly managing sleep apnea might reduce what is called the “afib burden.”
It appears to work for me as I’m devoted to using my CPAP. When I was first diagnosed and received my prescription for my CPAP, I remained committed to making it work. A return to afib was not an option for me.
Within our discussion forum for our patients, we are there to provide support and help patients adapt to their treatment plans, especially with their CPAPs. And we remind them that adapting to their treatment - whether it’s a CPAP or an XPAP - is much easier than managing frequent afib episodes. We know that each patient is an individual case, and we work with them on managing it. It’s imperative that patients understand that they have a cumulative sleep deficit that’s been building up throughout their lives, and that it can take time to see results
What is your message to those patients with afib who are struggling with sleep issues, particularly sleep apnea?
If you're struggling with sleep, especially if you think it might be sleep apnea, see your doctor, and get a sleep study. If you are diagnosed, commit to treating it. In my experience, treating sleep apnea is so much easier than dealing with the complications that can occur when it goes untreated.
Community is also really important. At StopAfib.org, we encourage patients to connect through our forums so they can learn from other patients who are managing both afib and sleep apnea (since they so commonly occur together).
And one final, important note: some people seeking a sleep apnea diagnosis may find the idea of an in-lab sleep study intimidating. To them, we often suggest asking their doctors for a home sleep study first, as a screener. While it won’t titrate you, it will give an indication as to whether you have sleep apnea. It’s an important first step toward diagnosis and treatment.
ResourcesPlease check out some of the videos on StopAfib.org to learn more about afib and sleep apnea. Create a no-cost account at https://www.stopafib.org/afib-resources/videos/.(NOTE: It can take 1-2 minutes for all the systems required to get connected when you sign up.).
2015 Session 7: Managing AF Risk Factors — Chair: David J. Wilber, MD, FHRS; Susan Redline, MD, MPH; and Mark S. Link, MD, FHRS (Dr. Redline starts at about 22 minutes in)
About Mellanie True Hills
Mellanie True Hills provides an atrial fibrillation (afib) patient perspective (now 20+ years
afib-free). She is an internationally-known author and speaker, and founder/CEO of
StopAfib.org, a global afib patient advocacy organization. Successes include creating
Afib Awareness Month, co-creating MyAFibExperience.org with American Heart Association, co-chairing global advocacy task forces, convening the National AF Health Policy Roundtable, and hosting the annual Get in Rhythm. Stay in Rhythm. Atrial Fibrillation Patient Conference.
About StopAfib.org
StopAfib.org was founded in 2007 by an afib patient for afib patients. Its mission is to improve the quality of life for those living with afib and save lives by raising awareness of afib and decreasing afib-related strokes and heart failure. StopAfib.org provides information about afib symptoms, causes, risks, treatments, resources, and the latest news. To access carefully curated afib-related videos, including recordings from all annual Get In Rhythm. Stay In Rhythm.®Atrial Fibrillation Patient Conferences, create a no-cost account at https://www.stopafib.org/afib-resources/videos/(NOTE: It can take 1-2 minutes for all the systems required to get connected when you sign up.). To learn more about the organization, visit www.StopAfib.org.
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