Asthma’s Inner World – a patients journey of discovery

By Alan Gray

World Asthma Foundation (WAF) is supporting care of Asthma and asthmatics around the world through a new Severe Asthma Series focused on “Defeating Asthma” with the aim of shining a spotlight on a deeper understanding and getting to a cure.
I’m Alan Gray, the Director of the World Asthma Foundation (WAF) located in Adelaide, Australia. Today, I’m talking to Bill Cullifer, in Northern California, he’s the founder of the World Asthma Foundation (WAF) and a Severe Asthmatic. I’m hoping to spend some socially distanced time with Bill to get his perspective on why he chose to establish the WAF in 2003 and what he finds important about Severe Asthma. We’ll also cover what he’d like me to accomplish heading up the Severe Asthma project as the Director in Australia.

Backstory

Bill retired in 2013 from his Web professional career as a result of battling severe respiratory issues. Complicated by anaphylaxis to Aspirin and allergy to Aspergillus, a common and ubiquitous Fungi in the air we breathe every day. Bill has debilitating Severe Asthma. Severe Asthmatics are at high risk for COVID19, so reaching out to Bill today is timely since he’s isolated like many other Asthmatics. As a colleague and friend, Bill has asked me to lend my web publishing experience to share his 17-year personal journey of discovery with Asthmatics everywhere. I’m pleased to be a supporter of the Asthma community and to lend a hand.

Question and Answer session with Bill Cullifer, Severe Asthmatic and Founder WAF

Alan: Good morning Bill and thanks for making yourself available.

Bill: Good morning Alan and thanks for the kind words and the gracious support. Nice to hear from you today.

Alan: Bill, we’ve known each other for over 20 years dating back to your Web professional efforts to educate and certify Web workers around the globe. I appreciate you reaching out to me to support the Severe WAF and the Severe Asthma Series. To that end, I have a few questions for you.

Bill: Ok, great thanks Alan and thanks for your support.

Alan: Why does Severe Asthma matter to you?

Bill: Great question. Severe Asthma is a global health crisis that affects over 300 million people worldwide. Asthma has already reached Pandemic levels by definition standards published by the World Health Organization (WHO). For those that suffer, Severe Asthma can be very debilitating and can cause premature death. I know first hand because Severe Asthma has dogged me personally for the last 17 years. While inhalers can be effective treatment for some, many Severe Asthmatics require daily systemic steroids, expensive treatment options and physical therapy.

Asthma rates are just getting worse. The projected rate for Asthma tops 400 million worldwide in the middle part of this decade. This is unacceptable really. Despite significant advances in our understanding, Severe Asthma continues to wreak havoc on individuals and our global economy. Given the toll on individuals, the burden on society and the huge financial cost, we need an “all hands on deck” to turn this around. Asthma education and advocacy are an integral piece for solving this puzzling disease in my opinion.

Alan: What can we expect from the WAF Severe Asthma series?

Bill: For a number of Severe Asthmatics, getting to a definitive diagnosis, can take years. In fairness, Severe Asthma is a complex disease, it’s confusing and frustrating for clinicians alike as well.

The Severe Asthma Series is about my own personal journey of discovery. A research journey that’s still unfolding actually. With encouragement from family and friends to share my story with others, I’ve turned over my 17 binders of notes, assembled my documents and medical records. I hope others can benefit from my story.

Alan: Any key takeaways?

Bill: For starters, Asthma is way more complicated than experts first realized actually. Also, Asthma is not a single disease but rather a syndrome. That’s major progress because it’s not only descriptive, it’s the truth. I’ve struggled to understand this for decades. We can’t defeat what we don’t understand and I think that unlocking the mystery is part of the Asthma solution I’d say.

Alan: How are you now and how are you holding up with the global COVID19 pandemic?

Bill: Severe Asthmatics are at high risk for COVID19 according to health experts around the globe. Like many in the over 60 crowd with underlying health issues, I’m hunkering down. I’m trusting my own instincts and following health guidelines by avoiding outside contact by staying indoors and hopefully out of harm’s way. Severe Asthma and COVID19 are both as much mystifying as they are isolating. I empathize with Asthmatics everywhere. It’s really a tough and uncertain time. Playing it smart, I think we’ll get through this.

Alan: Why did you establish the World Asthma Foundation (WAF) and what do you hope to accomplish with the Severe Asthma Series?

Bill: Alan, It’s human nature to want to learn more when you or someone close to you is diagnosed with a potential life threatening illness. To help me improve my personal understanding and diagnosis, I created a simple website at http://worlsasthmafoundation.org in 2003 and registered the WAF on the web. More of a newsfeed really than a website, The goal was to harness and publish daily Asthma news from around the world and to automate the delivery to my email every 24 hours. Community forums were not as robust as they are today. Automation saved me time from manually searching for the daily news. I learn something new about Asthma every day. Way more informational than I ever gleaned from reading the pamphlets at the doctors office. Today, the WAF has evolved to include a lot more than just the news. Over 8k subscribers last I checked. A lot has changed since 2003. Advances in research and technology, along with a number of very passionate researchers is on the rise and its a good thing to be reporting on. Ideally, and if you’re willing, I’m hoping to leverage your web publishing background to provide timely and relevant Asthma information that will benefit those that suffer. Asthma education matters and my hunch is that my findings can go a long way in moving the needle to our collective understanding of Severe Asthma.

Alan: What would you like Asthmatics to know about this series?

Bill: Severe Asthmatics like myself have daily struggles trying to breathe and living to see another day. I’m hopeful that my journey of discovery of the past 17 years will improve the level of understanding for the Asthma community. Asthma for example, is driven by both genetics and environmental factors, We’ve known that for sometime now. But what does that mean exactly? It’s been my mission to unpack this mystery. The genes we inherit are important but what impact does the environment have on our dna? Activation of the immune system has plagued researchers for years and it would also be nice to unpack this mystery as well. To be clear, I’m not a physician, and this should not serve as medical advice. I’m just a regular guy with Severe Asthma that’s trying to figure Severe Asthma out like everyone else. Science is about unlocking the truth and the truth is, together Asthmatics can ultimately prevail in getting the answers to a multitude of questions. Leading to a cure would be fantastic.

Alan: What would you like me to do to help Bill?

Bill: Alan, you’re an experienced web publisher. I’d like you to publish my findings and journey of discovery – a patient perspective to support those that suffer and those that support them. Interview the experts too and support the community with their expertise too. You’re good at this and it will help a lot. I’d be greatly appreciative and I know others will as well.

Alan: Thanks Bill. I appreciate your support as well. Asthma is a worthy cause. Take care of yourself and stay safe!

Bill: Thanks and you as well.

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