"What's Her Problem?" Podcast

Debra Rafson

“What’s Her Problem?” Podcast is the audio version of writer and patient advocate Debra Rafson's weekly Substack newsletter tackling Issues at the Heart of Chronic Illness and Disability through personal essays, interviews, opinion pieces, and more! whatsherproblem.substack.com

  1. 12h ago

    Interview Series: Gwen Mayes, JD, MMSc, Author of “More Person than Patient”

    This is the 6th episode of the “What’s Her Problem?” Interview Series. I hope you enjoy it and would love to hear your feedback! Note: Closed captioning and the full transcript are available after you click through to the video. One of the people I admire in the world of patient advocacy, especially as a woman living with heart disease, is Gwen Mayes. We first met as fellow Online Discussion Group Leaders for the Hypertrophic Cardiomyopathy Association and have gone on to participate in several other groups and activities together, including our role as WomenHeart Champions. Gwen has written a new book called “More Person Than Patient: Finding Your Purpose and Power with Chronic Illness,” which is being published by Mayo Clinic Press on November 3, 2026. Publisher’s Weekly has already reviewed it as “Empathetic and grounded, this is an empowering resource.” I couldn’t agree more. In this episode of the “What’s Her Problem? Interview Series,” Gwen and I dug into several of the topics in “More Person Than Patient,” including: the process of writing the book and what she learned from interviewing other patients (including me!); our shared experience of being diagnosed with Hypertrophic Cardiomyopathy (HCM); how to build your own “Survive-to-Thrive Tooklkit” for life with chronic illness; how people with chronic illness who feel like their diagnosis defines them can be more person than patient; Gwen’s journey to patient advocacy; how we both approach personal medical storytelling in our advocacy activities; and whether or not we have regrets. I hope you’ll watch, listen to, or read the transcript for this wide-ranging conversation. As a reminder, there are NO paywalls for the Interview Series. EVERYONE has access to this video/audio on Substack, YouTube, and all podcast platforms in its entirety. But your support is incredibly important so I can keep producing long-form interviews like this and my regular weekly content. Every dollar helps! In fact, Paid Subscribers already got a sneak peek at one of my two quotes from Gwen’s book in their first “What’s Her Problem? Insider” email last month. For more perks like that, including the opportunity to ask questions in advance for my next Interview Series Guest, you can subscribe for $6/month or $60/year. whatsherproblem.substack.com/subscribe In fact, Gwen has made a very generous offer: the first person who upgrades to a Paid Subscription to “What’s Her Problem?” after reading this email will get a free signed copy of “More Person Than Patient.” So, act now! Support without Subscribing: https://buy.stripe.com/4gM4gzg9gge46iGgHBdMI00 Enjoy my chat with Gwen, and remember…you are more than your diagnosis! Show Notes: 0:00-0:42 Welcome back to the What’s Her Problem? Interview Series 0:42-2:38 Gwen Mayes’ Bio 2:39-2:56 Greetings between Debra and Gwen 2:56-6:22 The process of writing “More Person Than Patient: Finding Your Purpose and Power with Chronic Illness” 6:23-10:05 What Gwen expected to learn during her book research vs. what she ended up learning 10:06-11:46 Debra and Gwen’s shared experience with a Hypertrophic Cardiomyopathy (HCM) diagnosis 11:47-17:44 Building your “Survive-to-Thrive Toolkit” and finding your sense of inner peace 17:45-26:44 Gwen’s advice for people with chronic illness who feel like their diagnosis defines them. How can they be more person than patient? 26:45-35:15 How Gwen became a patient advocate 35:16-41:30 Question from a Paid Subscriber (Upgrade to a Paid Subscription at whatsherproblem.substack.com so you can ask a question in advance for a future Interview Series Guest): Are there particular challenges to advocating for invisible or minimally visible illnesses and disabilities? 41:31-49:16 Does Gwen have any regrets about how she handled her own chronic illness diagnosis? 49:17-50:09 Other topics in “More Person Than Patient” 50:10-51:37 Wrap-Up and how you can follow Gwen 51:38-52:23 Outro Buy Gwen’s book: “More Person Than Patient: Finding Your Purpose and Power with Chronic Illness” Follow Gwen: GwenCo Health Instagram: https://www.instagram.com/gwenmayes/ Facebook: https://www.facebook.com/gwen.mayes LinkedIn: https://www.linkedin.com/in/gwen-mayes-jd-mmsc-4511178/ WomenHeart: womenheart.org Hypertrophic Cardiomyopathy Association: 4hcm.org Gwen’s Bio: Gwen Mayes is a former physician assistant, attorney, and staunch patient advocate having lived with a rare, genetic heart condition – hypertrophic cardiomyopathy – since birth. Following an extensive 30+ year health policy career in Washington, DC, she founded GwenCo Health, a consulting firm devoted to bringing the patient’s real-world experience to the forefront of regulators and health policy decision-makers. Prior, she was the head of Advocacy Relations for Bayer US Women’s Healthcare from 2013-2019. During the passage of the Affordable Care Act, she was the EVP of Public Policy for the National Patient Advocate Foundation; immediately prior she was the first Director of Government Affairs and Reimbursement for Abiomed, an innovator in cardiac device support, between 2005-2010. Currently, Gwen serves as the only Patient Representative on the Oversight Committee for the American College of Cardiology’s National Cardiovascular Data Registry, a WomenHeart Champion since 2005, a volunteer for the Hypertrophic Cardiomyopathy Association, and Advisor to the Patient Centered Outcomes Research Institute’s Clinical Effectiveness Research Committee. Gwen received her AB in Biology and Pre-Medical Studies from Transylvania University, her Masters of Medical Science from Emory University, and her JD with honor from the University of Maryland. Her first book, More Person Than Patient: Finding Your Purpose and Power with Chronic Illness is being released on November 3, 2026, by Mayo Clinic Press. This week’s questions: Do you ever feel like chronic illness has consumed your identity? If so, how do you get back to feeling more like a person than a patient? This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit whatsherproblem.substack.com/subscribe

  2. Oct 23

    Reflections on the 2026 HCMA Patient Meeting

    Last October, I wrote about my first time attending the Hypertrophic Cardiomyopathy Association’s Annual Patient Meeting. If you’d like to compare and contrast my experiences between last year and this year, here were my reflections from 2025. Note: This year’s reflection is a comprehensive one. If the end is cut off by your email provider due to the length, just click “View Entire Message” to see the rest, or read it in full on your web browser or Substack App. You won’t find the word “pivotability” in Merriam-Webster’s dictionary. But it’s a concept that’s easy to grasp, especially for patients managing chronic illness. Pivotability is “how open, flexible and agile you are to change.” It encompasses the ability to pivot, to chart a new course, and, perhaps most importantly, to be resilient. This word loomed large at the Hypertrophic Cardiomyopathy Association’s (HCMA) Annual Patient Meeting at the Hyatt Regency in Morristown, New Jersey on Saturday, October 10, 2026. Not just because those of us who attended were gifted with t-shirts announcing that “Pivotability is My Superpower” or because the event organizers had to modify their plans when the remnants of Hurricane Isaias conspired to postpone their planned 5K run/walk the following morning. Rather, it was because this skill of pivotability wove its way into every topic and presentation in some way, shape, or form. In this article, I will review some of the Patient Meeting’s highlights, especially as they relate to this idea of pivotability. An Overview of HCM and the HCMA 2026 marks the 30th anniversary of the Hypertrophic Cardiomyopathy Association (HCMA), whose mission is “Providing support, advocacy, and education to patients, families, the medical community, and the public about hypertrophic cardiomyopathy and all thick heart muscle disorders, while supporting research and development of treatments and diagnostics.” Founder and CEO Lisa Salberg opened the day with a grand entrance to the sounds of Taylor Swift, and she wove her way through the conference room, hugging about a dozen people along her path up to the podium. In the room were nearly 200 attendees: HCM patients, their families/friends/caregivers, doctors from the Centers of Excellence in Hypertrophic Cardiomyopathy, representatives of the pharmaceutical companies who develop drugs for HCM patients, the HCMA staff and board, and other interested parties. Lisa reviewed the history of the HCMA, from the early days of fax machines and message boards, through the creation of the Centers of Excellence, drug companies and cardiologists turning their attention to HCM, and going global with patient outreach. On display at the front of the room throughout the day, next to a photo of the two men together in 2009, was the original 1959 typewritten letter from Dr. Eugene Braunwald to Claude Brady, diagnosing him as the first patient with Hypertrophic Cardiomyopathy. Mr. Brady’s local doctor first heard his heart murmur in 1948, but Dr. Braunwald was the first to describe it in the modern terms we now use for HCM. As she turned her attention from the past to the future, Lisa announced two upcoming initiatives, including a partnership with the American Heart Association (4 select hospital locations will distribute flyers to HCM patients offering free support) and the “Know Your 9” Campaign, in which patients will get their 9 most important HCM data points listed on a wallet card so they can easily share it with their doctors. Dr. Martin Maron, who happens to be my HCM Cardiologist, took to the podium next for an overview of HCM. A way to level-set for anyone in the room who was new to the disease or the field of study. In short, Hypertrophic Cardiomyopathy is the most common genetic heart disease in the world, affecting between 1 in 200 and 1 in 500 people worldwide. 70% of HCM patients have an obstruction to blood flow through their left ventricle, where the wall thickness is greater than 15mm. The rest are unobstructed. “In 2026, HCM is a highly treatable heart disease,” said Dr. Maron. “The primary goal in HCM treatment is to improve quality of life by restoring it to normal or near normal.” Treatment plans between 1999 and 2019 led to a 53% reduction in mortality rates for patients with HCM. Pharmaceutical Pivotability Since 1957, Beta-Blockers, a class of drugs more commonly used in other cardiac conditions like high blood pressure and angina, have been the first-line medication treatment for HCM patients due to their ability to “slow the heart beat and reduce its force of contraction.” In the absence of other options, they were a good starting point, but it was time for pharma to pivot. In 2012, a company called MyoKardia recognized the need for targeted therapies in Hypertrophic Cardiomyopathy and reached out to Lisa and the HCMA to learn more about what would help patients the most. While MyoKardia was later acquired by Bristol Myers Squibb, the drug they were developing became Camzyos (or Mavacamten), the first-in-class Cardiac Myosin Inhibitor (CMI). A drug that has been revolutionary in HCM care, for patients with an obstruction, since its approval by the U.S. Food and Drug Administration (FDA) in 2022. In late 2025, a second Cardiac Myosin Inhibitor, Myqorzo (or Aficamten), from Cytokinetics, was also approved for HCM patients with an obstruction. “Cardiac Myosin Inhibitors (CMIs) treat HCM at its source rather than managing symptoms.” But in an awesome display of pivotability, the doctors and pharmaceutical companies working in HCM weren’t satisfied with these two new medications, despite their remarkable impact on patients. Rather, a whole industry has shifted towards developing additional targeted therapies for both non-obstructed patients (a population with huge unmet need) and obstructed patients. Here’s what else we learned about in the clinical trial pipeline for HCM: * Both Camzyos and Myqorzo are being studied to see if they can have a positive impact in HCM patients without an obstruction. So far, Myqorzo’s ACACIA-HCM trial yielded positive results. According to Dr. Maron, it’s the “first time in 60 years we’ve been able to demonstrate that a medical therapy has been clearly associated with a real clinical benefit for patients with non-obstructive HCM. A big deal in a lot of ways, for that reason.” * Haya Therapeutics is investigating an Antifibrotic Therapy. Fibrosis is a stiff scar inside the heart muscle and a key feature of HCM. It impacts how well or poorly the heart can relax and squeeze. Scarring may generate abnormal rhythms and can be assessed with Cardiac MRI with contrast. This drug is an Antisense Oligonucleotide (ASO), which is an RNA therapy (not a gene therapy). WISPER/HTX 011 is about to begin a Phase 2 clinical trial. * Imbria Pharmaceuticals is currently enrolling patients in the US and Europe for their Phase 3 clinical trial, FORTITUDE-HCM. Their drug, Ninerafaxstat, is designed to shift energy use in the HCM heart from fatty acids to glucose and acting in the mitochondria, where heart cells produce energy. The heart needs a lot of energy in the muscle to relax and contract well. This drug is directed at patients with non-obstructed HCM. * Braveheart is bringing us HRS-1893, which would be a new Cardiac Myosin Inhibitor. According to Dr. Milind Desai, Director of the Center for HCM at the Cleveland Clinic, one of the most engaging presenters of the day, early data shows this drug “Maintained a favorable safety profile with minimal changes in left ventricular ejection fraction.” In other words, it was effective in reducing symptoms without causing new signs of heart failure. * Edgewise Therapeutics’ drug, EDG-7500, a cardiac sarcomere modulator, differs functionally from the others listed here because instead of an on/off approach to the full cardiac cycle, it targets a specific moment at the beginning of the cardiac cycle. Early clinical data shows that it allows obstruction to be removed without reducing Ejection Fraction. Or, as Dr. Michael Ayers, Director of the Center of Excellence in HCM at UVA Health described it, “you can have your cake and eat it too.” * Tenaya Therapeutics is working on the first gene therapy for Hypertrophic Cardiomyopathy patients. TN-201 targets the MYBPC3 gene, which is one of the most common genetic markers of HCM (and the one I have). Dr. Radhika Agarwal, Physician & Researcher from Mass General Brigham, did a deep dive into how gene therapies work. To summarize, you need the right Vector (virus) carrying the right Payload (gene/protein/code) into the right Patient at the right time. And delivering that gene is not the same as treating a disease. It must be accompanied by the right manufacturing, the right pricing, and equitable access to the treatment. Early clinical data shows that patients who received TN-201 began to show improvements in their biomarkers 6 months after dosing. And after all that pivoting to new options, where does that leave Beta-Blockers? In the last 60 years, there has only been one clinical trial to determine how effective Beta-Blockers truly are for HCM patients. That MAPLE-HCM study showed both that the effects of one Beta-Blocker, Metoprolol, actually made symptoms worse with exercise as compared to patients who were not taking any medications and that patients who take Cardiac Myosin Inhibitors can stop taking Beta-Blockers. Dr. Maron assessed there is now “diminished enthusiasm for Beta-Blockers because of the effects on exercise, as well as other side effects” and that “Now we have other options.” Talk about the evolution of an entire field! Surgical Pivotability I recently wrote about the 10-year anniversary of my own open-heart surgery, a septal myectomy to remove the obstruction to blood flow in my left ventricle. In that article, I described the surgery and why it was such an important advancement in HCM

  3. Oct 16

    Q&A with Family Medicine Physician Dr. Jennifer A. Kabak

    U.S. medical student entry into Primary Care (Family Medicine) has fallen by roughly one‑third since its 1997 peak, from 2,340 medical school seniors to 1,512 in 2026. And despite record participation in the National Residency Matching Program (NRMP), Family Medicine filled only 83.6% of its positions in 2026, leaving 899 positions unfilled. An unnerving gap in the pipeline of incoming practitioners. I know how concerned I am about this as a patient, but I wanted to know more about the physician perspective. I reached out to Dr. Jennifer A. Kabak, Family Medicine Physician, and asked her some questions about her field of work. Dr. Jennifer A. Kabak is a Board-certified Family Medicine physician who sees patients in Prima CARE’s Somerset-Swansea Medical and Ambulatory Care Centers in Massachusetts.Dr. Kabak earned her Doctorate in Osteopathic Medicine at the New York Institute of Technology College of Osteopathic Medicine (NYITCOM). She completed her residency training in Family Medicine at Kent Hospital in Warwick, Rhode Island, where she also served as Chief Resident. Dr. Kabak has experience practicing Family Medicine in many diverse settings, from community health centers to offices where medical students and residents rotate to student health services. Prior to relocating to New England, she was on staff at New York University’s Student Health Service.Dr. Kabak is a member of the American Osteopathic Association, the American College of Osteopathic Family Physicians, and both the Massachusetts and Rhode Island Society of Osteopathic Physicians and Surgeons.Dr. Kabak provides comprehensive primary care to patients ranging in age from teens to the elderly, with a particular interest in preventive medicine and women’s health. As an affiliate of the Brown University Health Network, her patients are admitted to Saint Anne’s Hospital in Fall River, Massachusetts. I’m grateful to Dr. Kabak for her honest takes and the insight into her day-to-day work, as well as for recording her answers in the audio version of this issue! Debra: Dr. Kabak, when did you first realize you wanted to become a doctor? Dr. Jennifer Kabak: I had transferred to New York University to start my junior year of college. I was studying journalism and had taken a job to help offset the cost of tuition. I was working for an Ophthalmologist on the Upper East Side and really enjoyed the work. Patients would ask my opinion after hearing from the physician, and I did not feel competent to weigh in on their treatment plan. It got me curious, and I wanted to do and learn more. In my personal life, at the time, I was dating a medical student and learning a lot about the medical field. Those two experiences started to get me thinking about not just writing about health care but possibly practicing it. Debra: At what point did you decide to pursue Family Medicine/Primary Care, and why? Dr. Kabak: As previously mentioned, I worked for an Ophthalmologist for years and thought I may be following him into that field. But during my third year of medical school, I was exposed to clinical rotations. I had a great Family Medicine clerkship. I believe my previous experience as a journalist led me to practice Family Medicine. The same level of curiosity that makes a good reporter also makes a good Family Medicine physician. I enjoy the story. And there is always a story. When I interact with a patient, especially for the first time, I make sure to gather all the data and store it in the medical chart. And the next time that patient comes in, depending on the reason, I make sure to utilize that information to continue the connection. Debra: Do you feel like medical school and your residency prepared you well to practice Primary Care in the real world? Why or why not? Dr. Kabak: At the time of my training, I do believe that both medical school and residency prepared me to start practicing in the real world. I had great support with my fellow classmates as we all pushed each other to the finish line of graduation. And I was very lucky to land in a residency program with an amazing group of clinicians, who are some of my dearest friends today. I was allowed to reach for the stars and go after any and all experiences to make my time in residency a well-rounded journey. Debra: Should I read anything into the phrase “At the time of my training?” Do you think the training is different now? Dr. Kabak: I do think training is different now. I was last involved in teaching almost four years ago, and I can say, at that time, I noticed training was different. When I was a student and a resident, books still played a very prominent role in our education. I went to a tech school; we did have technology rolled into our education through the simulation lab and the ability to watch lectures online, but I also have a vivid memory of books bulging in the pockets of my white coat. I fondly recall surviving my pediatrics rotation with the bible of pediatrics, Harriet Lane, in my pocket. Today, technology is overwhelming. Smartphones are now in pockets instead of books, and information is immediately at your fingertips. I think these changes are good and bad. When I was teaching in New Jersey, I had an experience where the resident couldn’t answer my question about medication dosing despite sitting in front of his laptop. I think of this example and wonder if there is too much information out there and maybe, for some, it is difficult to identify the quality. My other thought is that maybe technology has made us a bit lazy. There is something to be said about looking up the answer because then, at least in my mind, you own that answer and will be able to recall it in the future. Debra: I know an issue that is important to both of us is the amount of time, or lack thereof, that Primary Care physicians are scheduled to spend with each patient, largely due to the way insurance company reimbursements are structured. Can you provide some insight into what that really looks like? How does it impact your patient care, and how does it impact your practice’s bottom line? Dr. Kabak: My day is broken into 20-minute appointment times, with an hour blocked off for lunch from 12:00-1:00pm, which is really catch-up time (sometimes my day bleeds into this hour, whether I am running late or sticking in additional patients, or dealing with all the administrative items). I do try to give my staff at least 30 minutes to eat lunch, have a breather, and not keep up with my crazy schedule. Speaking for myself, I can say I NEVER allow time to impact patient care. Sometimes I need less than the allotted time, sometimes I need more, and sometimes life happens and I need to pivot and deal with an emergency, so time goes out the window. If I am running behind, I always go into the patient with an apology and let them know (privacy respected) why I needed the extra time. And, most often, I never get any pushback because my patients know I am giving each person his/her/their time and listening and reacting. Now, how does it impact my practice’s bottom line? That is a question for my boss! As a sole practitioner, I am very cognizant that I need to see patients to bring money into the practice. But I NEVER sacrifice patient care to make that happen. If it means I don’t get to eat lunch at “lunch time” or I don’t get a minute to use the bathroom until the end of the day, or I have to run and finish notes at a later time in the day, I do that. In a perfect world, I see patients in a timely manner in a set schedule, and at the end of the day I shut my computer and go to my second life of being a mom, wife, and daughter. But unfortunately, that is not realistic. And while that is not ideal, what would make it less traumatic would be if patients recognize that physicians have a life outside of medicine that we would love to be 100% present at. So, the yelling, screaming, and demanding that they project onto us is not appreciated. For the most part, we are all just trying to manage the “work-life balance.” Debra: Patients, myself included, perceive that some doctors want to treat the symptoms of a problem but not find the root cause. I’m curious to hear your take on this. Dr. Kabak: Sometimes, if it is truly something quick and easy and symptom-oriented, then treating the symptoms is not such a bad idea. If symptoms persist, then there needs to be a deeper dive, which would lead to trying to diagnose a cause. Now, this is where it can get a bit sticky. Sometimes, trying to get to the root cause is not so easy, and I think it then depends on the physician…and the relationship between the doctor and the patient. As a Primary Care physician, I have a good relationship with my patients and know them pretty well. I remember a patient calling me during COVID (when we were not in the office but doing a lot of telemedicine), and she had been seen by an outside Urgent Care a few times for a “sinus infection.” She was not getting better and finally decided to call my office. She had a history of sinus infections, but when I got on the phone with her, I stopped her and told her she did not have a sinus infection and whatever was going on, either she was going to hang up and call 9-1-1 or I was going to because she could not complete a sentence on the phone (due to shortness of breath). I like to pride myself that I know my patients fairly well, and this was not a symptom of her typical sinus infection. Debra: During your career, you’ve experienced the transition from paper files to Electronic Health Records systems and, now, the advent of AI tools. How has that changed the way you interact with patients and document their care? Dr. Kabak: The transition from paper to electronic health records, for me, has not been such a major change. I believe I am able to connect with my patients even with a computer in the room and I sometimes utilize it to show them pictures or look up some things t

  4. Oct 9

    Celebrating 10 Years Since Open-Heart Surgery

    “Anniversaries live in your body, not just your mind.” -Tanmeet Sethi, MD Surgiversary #10 Ten years. TEN YEARS! A whole decade has passed since I had open-heart surgery to remove the obstruction to blood flow through my heart, caused by the genetic heart condition Hypertrophic Cardiomyopathy (HCM). Last year at this time, I wrote about how I struggle to celebrate Surgiversaries, or surgical anniversaries, and wondered how I would celebrate the huge milestone of ten years in 2026. Well, the big Surgiversary week is here, and I am celebrating… by living! As you read this, I am traveling to visit family and friends, and to attend the Hypertrophic Cardiomyopathy Association’s Annual Patient Meeting. Travel. Filling my emotional cup. Continuing to be a student of my disease. Convening with other HCM patients who have been through similar experiences, including open-heart surgery. I think that’s a pretty great way to mark the occasion of living ten years beyond a day that was both transformative and traumatic. I’ve never written publicly, in detail, about the septal myectomy, the open-heart procedure itself, despite writing about many of the events and emotions that surrounded it. Until now! What is a Septal Myectomy? In 2011, the first cardiologist I ever saw told me, on day one, that I would probably need open-heart surgery at some point to relieve my symptoms. I chose not to believe him. He hadn’t really explained why he was recommending this procedure or how it was done. Not well enough for me to get it and buy into it anyway. Open-heart surgery sounded too scary to consider. So, let’s do some definitions that I wish someone had shared with me during that first cardiology appointment: Septum means “a dividing wall or membrane especially between bodily spaces or masses of soft tissue.” In the case of the heart, a “band of muscle called the septum separates your two ventricles. In hypertrophic cardiomyopathy, the septum thickens and may bulge into your left heart ventricle. This bulging blocks blood flow, meaning your heart has to work harder to pump blood through your body.” The ventricles are the lower chambers of your heart. Myectomy, and its sister, the myotomy, “are related surgical procedures, both involving careful intervention on muscle tissue to restore proper function or relieve blood flow obstruction. Myotomy involves an incision, and myectomy involves the removal of damaged tissue.” Therefore, when you combine them, a Septal myectomy is “surgery to thin out the wall between the left and right side of the heart... Thinning the septum also reduces mitral valve regurgitation, a condition in which blood flows backward into the atrium, or upper chamber of the heart. Septal myectomy is the most commonly performed surgical procedure for people with HCM.” If all this terminology is new to you, no worries! Most non-cardiology doctors I encounter don’t know what it is either. I’ve had at least a dozen confuse it with a myomectomy, which is “a surgery to take out fibroids from the uterus.” A completely different procedure. It also differs from common bypass surgeries. Understanding Why I Needed a Septal Myectomy So, in 2012, when I sought out a Cardiologist who specialized in Hypertrophic Cardiomyopathy, I went into my first appointment with him feeling undereducated about the disease and the reality of my options. Dr. Martin Maron, who was at Tufts Medical Center in Boston, at the time, quickly educated me by showing me my own Cardiac MRI images. Here is a never-before-seen passage from my memoir-in-progress about the day I finally understood what a septal myectomy was and why I needed to have one: My Cardiac MRI showed a “left ventricular anteroseptal wall thickness” of 19mm. Right in the sweet spot for someone with the obstructive version of Hypertrophic Cardiomyopathy. Though, I was delusional enough to think, “well, 19mm isn’t so bad compared to how big some HCM patients’ septa are, if they can go all the way up to 60mm.” Right? Wrong! In fact, so wrong that Dr. Maron guided the next part of our conversation towards the very topic I had been dreading. Open-heart surgery. “Deb, the other less-invasive surgical options are not really great options for you,” he said. I listened, horrified. A septal ablation, he explained, which is when they burn off some of the excess heart muscle, might leave me with new arrhythmias and wouldn’t be complete enough or have long-lasting results. A cardioversion, where they shock your heart, was reserved for people who were already having severe arrhythmias, but that wasn’t how my symptoms were displaying themselves. “Your problem is the thickness of the septum and its interference with the mitral valve, along with some problems with the papillary muscles,” he said. “The single best solution for that is a septal myectomy.” I would be shocked if my jaw wasn’t actively hanging on the floor as he explained what a septal myectomy (pronounced: sep-tull my-eck-toe-mee) entails, as opposed to the vague concept of one that I had cooked up in my overactive brain. It is full-on open-heart surgery. They put you on bypass, saw your sternum in half, slice into your heart, and cut out the excess heart muscle, thereby removing the obstruction. Oh, and they would re-position my mitral valve while they were in there, all before putting my chest back together with some combination of wires and glue. I don’t phrase it that way to be flippant. Quite the opposite. Because once I saw my Cardiac MRI, heard Dr. Maron’s assessment, and understood what a septal myectomy was, it was abundantly clear that it was the right treatment option. Knowing it was the right treatment option didn’t mean it was easy to accept, but it did give me clarity that a septal myectomy would become part of my treatment path, and I embarked on a years-long journey to accepting that. What happens during the surgery? According to the Cleveland Clinic, one of the highest-volume surgical centers performing septal myectomies, the surgeon: * “Makes a large incision down the middle of your chest and separates your breastbone (sternum) to reach your heart. * Connects you to a heart-lung machine that takes over the work of your heart and lungs during surgery. * Removes the thickened portion of your septum. * Disconnects the heart-lung machine. * Puts your breastbone back together and closes the incision with absorbable sutures. A septal myectomy usually takes between three and four hours.” My medical records tell me that I was on bypass for 139 minutes, and my surgery took a total of approximately four hours. Beth Israel Lahey Hospital & Medical Center in Burlington, Massachusetts, where Dr. Maron and his team now run their Hypertrophic Cardiomyopathy Center of Excellence, has a helpful video depicting how the surgery is done (note: this video uses digital graphics, rather than real surgery footage): What is the recovery process like? Most myectomy patients are in the Intensive Care Unit (ICU) for a day or two post-op, then move to a step-down unit for 3-5 days before being discharged to their home. It’s best to have friends or family around to help afterwards because there are restrictions on lifting and reaching. I was in the Cardiac ICU for 6 days because I developed complete heart block from the surgery. The electrical signal from the upper chamber of my heart was no longer reaching the lower chamber. I ended up needing a second surgery to place an Implantable Cardioverter Defibrillator (ICD), which is both a pacemaker and a defibrillator. But on day 7, I finally made it to the hospital’s step-down unit, and I was released on day 9. I’ve talked to some septal myectomy patients who were back to most of their regularly scheduled activities after 8 weeks. Most patients fully recover in an average of 3 months. It took me a year and a half. So, it’s a pretty broad spectrum. Some people need little or no physical or occupational therapy post-op. I had 10 months of cardiac rehabilitation, which was essential to my recovery process. Once I had fully recovered, my symptoms did improve. I remember Dr. Maron telling me that something like 80% of septal myectomy patients feel 80% better afterwards. That percentage is even higher now, as they’ve fine-tuned the procedure in the last decade. “Septal myectomies have high success rates. In one study, 94% of people experienced symptom improvements after surgery. Long-term, people who had a septal myectomy had the same survival rates as the general population.” My advice for other septal myectomy surgical candidates My Dr., Marty Maron, is the son of Dr. Barry Maron, one of the earliest cardiologists to focus his efforts on treating patients with Hypertrophic Cardiomyopathy. On Hypertrophic Cardiomyopathy Awareness Day in February 2022, Barry Maron said something that resonated with me so strongly that I had to write it down: “Septal myectomy is about the ability to reverse heart failure.” Short, simple, but jam-packed with information. In that one sentence, the elder Dr. Maron summed up just what an important medical advance the septal myectomy is. I had spent so much time resisting the surgery and being terrified to go through with it that I never stopped to consider how lucky I was that surgery was even an option for me. And that the odds were really good it would help me. If I didn’t have an obstruction, I would have been almost out of options, at that time, when the medications didn’t relieve my symptoms. A septal myectomy was, and is, HUGE progress in HCM care. I wish I heard Dr. Maron say this many years earlier. Now, I share the sentiment that we are lucky to have this surgical option with other HCM patients who are considering a myectomy as part of their treatment plan. I also offer three other pieces of advice: * Only consider having the surgery done at a high-volume center. Meaning, a Ce

  5. Oct 2

    Interview Series: Sylvia Baedorf Kassis, MPH, Clinical Research Program Director

    0:00-1:04        Welcome back to the Interview Series 1:05-2:02        Introducing today’s topic 2:03-3:31        Sylvia’s Bio 3:32-4:30        Sylvia and Debra opening greetings 4:31-6:31        Why is Health Literacy Month important to Sylvia? 6:32-9:49        How Sylvia got into the field of Clinical Research 9:50-12:04      Sylvia’s interest in a Lyme vaccine trial 12:05-12:54    Clinical trials don’t mean you’re being “experimented on” 12:55-16:04    Clinical Research 101 16:05-18:14    MRCT Center Clinical Research Glossary 18:15-29:09    The History of Ethics and Justice in Clinical Research 29:10-36:39    Clinical Trial Phases 1-4 36:40-42:30 How patients become Clinical Trial participants 42:31-53:37 Informed consent, eligibility, and the risks and benefits of Clinical Trial participation 53:38-1:00:37 Debra’s Clinical Trial Experience and the importance of sharing research results with patients 1:00:38-1:04:47 The effects of research funding cuts at Harvard (A question from an Open-Hearted Supporter of “What’s Her Problem?” Subscribe now at whatsherproblem.substack.com to be able to ask your own questions to future Interview Series Guests!) 1:04:48-1:08:16 Wrap-Up   The MRCT Center Clinical Research Glossary: https://mrctcenter.org/glossary/    Clinical Trial Registries: https://clinicaltrials.gov    Sylvia Baedorf Kassis on LinkedIn: https://www.linkedin.com/in/sylvia-baedorf-kassis-mph-cyt-9418737/   MRCT’s Free Webinar Series: https://mrctcenter.org/events/ SUBSCRIBE TO "WHAT'S HER PROBLEM?": https://whatsherproblem.substack.com/subscribe SUPPORT WITHOUT SUBSCRIBING:https://buy.stripe.com/4gM4gzg9gge46iGgHBdMI00 This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit whatsherproblem.substack.com/subscribe

  6. Sep 18

    Rediscovering Myself After Open-Heart Surgery

    Rediscovering Myself After Open-Heart Surgery Issue #54 of “What’s Her Problem?”: I felt lost after a major medical event…until I cleaned out my own storage unit. How I Lost Myself I sold the condo I owned for ten years the same week I had open-heart surgery. It wasn’t great timing. In the weeks leading up to these two huge, simultaneous events in the fall of 2016, friends and family volunteered their time to pack a decade of my life into boxes. I was too sick to do it myself. The boxes were stored in a local Boston-area storage facility for over a year, until I had them moved to one near my parents’ home, where I was enduring a much-longer-than-expected recovery process. Once my storage boxes and I were reunited, it would have been easy to get overwhelmed by the magnitude of the organizational project ahead of me. Each possession was frozen in time in whatever configuration my friends and family had left them during the packing process. Most people never get the opportunity to go back through their things and clear out the clutter of the past. If not for this employment gap/recovery period, I probably never would have tackled it myself. But over the course of the next 8 months or so, I sorted through my storage unit, box by box. Rather than finding all of the document scanning and box sorting tedious, I enjoyed it! The reason why was surprising. When I survived the surgery, I had a new lease on life but no idea who I was anymore. I had allowed Hypertrophic Cardiomyopathy (HCM) to turn me into a shell of my former self. I desperately wanted to find the real me again, and I found her buried in those boxes. I Am… While many of the boxes contained practical documents like bank statements, health insurance Explanations of Benefits (EOBs), and pay stubs, it was the less archival contents that were the most instructive about my old self. Here’s who I found and what I learned during my trip down memory lane: …a Reminiscer You could call me a pack rat, but never a hoarder. My pack rat tendencies stem from a deep sense of nostalgia. As such, I unpacked an extraordinary amount of memorabilia and souvenirs. That meant combing through collections of: autographs; ticket stubs; playbills; childhood artwork; sticker books; slam books (who remembers slam books?!); and special editions of magazines (especially my beloved Entertainment Weekly; RIP to the print edition), among so much more. It reminded me not to be ashamed of hanging onto the memories that evoke positive emotions or immediately take me back to moments in time I don’t wish to forget. My nostalgia is a key part of who I am. …a Reader Books filled box after box to the brim. There were children’s books, academic texts, at least 25 books in Spanish (a leftover from my college Spanish Major), and play scripts. I even had collections from my teenage years, including most of the Sweet Valley High series, which I purchased as soon as they became available at the Corner Book Shop in the New York suburb where I grew up. I also retained years’ worth of Summer Reading Challenge certificates of completion from the local library. Before donating most of the books, I took pictures to document their legacy. A select few remain in my bookcase and my pared-down storage unit. I remembered how much I love storytelling and that being a lifelong learner matters to me. After this project, I was inspired to take up listening to podcasts and to read more newsletters and personal essays. …a Photographer Everyone who knows me knows I take a lot of pictures. So, it should come as no surprise that the bulk of my scanning and documentation project was my photo albums. I have been a prolific photographer since the pre-digital camera days. I scanned thousands of pictures, dating back to my very first pink Le Clic film camera in 1988; the first photo on the first roll of film was of my best friend and I. I had the negatives and everything! And those hard copy photos and negatives ran all the way up until 2004 when I finally got a digital camera. Each photograph brought back a little piece of my life, a memory, a moment in time that my health-addled brain had let slip a little too far away. They served as the perfect reminder: don’t just take the pictures. Take them in abundance and look back through them again and again. …a Music Lover Remember cassette tapes? I had hundreds of them. Paula Abdul’s “Forever Your Girl,” Janet Jackson’s “Rhythm Nation,” and the soundtracks of “Les Misérables,” “Miss Saigon,” and “Newsies” blared from the cassette deck of my father’s car, whenever I could convince him to let me play them. I was an avid radio listener too. It started in Junior High School when I would record mix tapes on blank cassettes from the playlist of the local alternative station, then later the Pop/Top 40 hits of New York’s Z100. With the advent of CDs, I had hundreds more, in every genre, all filed neatly into CD binders. Music is my constant companion when I drive, but in the aftermath of my surgery, I was driving less. I knew I needed to make more of an effort to keep music in my life and take advantage of its mood-boosting properties. …a Writer My most forgotten self was in my writing. I unearthed songs, essays, short stories, and diary entries. There were notebooks filled with ideas (including some with fashion designs?!). My takeaway from finding my handiwork? I had the skills to write a memoir, which I started work on shortly thereafter. And I could write personal essays for a publication like “What’s Her Problem?”! It inspired me to sign up for my earliest writing classes. …a Traveler Every summer of my childhood, our family went on a road trip. The final destination was always my grandparents’ house in South Florida, but we found new routes from New York, and places to stop along the way, each year. Washington, D.C., Atlanta, Disney World, St. Augustine, Texas, New Orleans, Kentucky, Tennessee, Niagara Falls. And at each stop, I bought souvenirs. I collected magnets, brochures, postcards, keychains, pencils, t-shirts, and more. As an adult who went on my own trips, the souvenir collection only grew. For example, I kept every document from three trips to Spain and the European adventure with my best friend. I wasn’t sure how much travel would be possible for me after my surgery, and I certainly couldn’t have imagined the additional disability and complications that would arise only a few years later. But I knew that seeing new places and experiencing other cultures was important to me. …a Family Member and Friend Among the most educational items I had stored were letters, postcards, and greeting cards. I kept every one I’d ever received. So, unlike the financial documents, which I sent through the scanner and then the shredder without a deep dive into their contents, I sat down and read each hand-written note before scanning it for posterity. I read every birthday card, including the ones my mother had been saving for me since my 1st birthday. I pored over letters that my best friend and I exchanged during our summer vacations, when we had to be pen pals until we could re-unite at home. Cell phones, emails, and text messages didn’t exist yet. I read through folded notes my friends and I would pass to each other in the hallways between classes in Junior High School, back in the days when we were a little too catty for our own good. I had holiday cards and graduation cards from elementary school all the way through graduate school. There were: letters from ex-boyfriends; opening night cards from actors; drawings and letters from my godson and his brother; wedding, bridal shower, bachelorette party, and baby shower invitations; Valentine’s Day cards; thank you cards; birth announcements; and funeral programs. You name the life event; I had a record of it. I couldn’t help but think; “Look at all of these people who cared enough to send me real things in the mail! Look at the number of people who enjoyed working with me before I turned into a sick, grumpy mess! Look at all of these experiences I had!” That struck a chord with me. It was also a reminder that I had plenty of faults too. There were a few letters and postcards that I’m sure I didn’t respond to or reciprocate. Thank you cards I should have sent. Ways I could have been a less bratty kid or better big sister and friend at an earlier age. The ones that hit home the most were the cards and letters from my grandparents. My paternal grandmother outlived my paternal grandfather by about a dozen years, and it was no secret how lonely she was after he passed. When I was in college, she would send me handwritten letters, and she almost always included a clipping; an article from a newspaper or magazine that she thought I would find interesting. She ended the letters with a request for me to call her to discuss the clippings. I did call her sometimes. Other times, I didn’t. I was so wrapped up in being a college student and asserting my independence that I know I didn’t call in response to every letter I received. Now, the me who had lived through open-heart surgery wanted to be the kind of person who would have handled that differently. So to with my maternal grandmother. Her letters, written in perfect script penmanship, asked for less of my attention in return, but showed just how much she and my maternal grandfather wanted to be part of my daily life, even though they lived in Florida and I was in New York. I found letters congratulating me on visits from the tooth fairy and thanking me for weaving scarves for them with a loom I’d gotten as a birthday present. There were notes telling me about big trips they’d gone on and also about their weekly bowling outing. My maternal grandmother was always the most well-liked member of our family, because of her kindness and warmth, and re-visiting her letters was a good kick-in-the-pants r

  7. Sep 11

    Q&A with Erika Warren of Inciteful Med

    AI may be the hottest topic of conversation in the world right now, as it weaves its way into many aspects of our lives. Is it trustworthy or untrustworthy? A technological marvel or an environmental disaster? Or both? It all depends on who you ask. When it comes to healthcare, patient concerns about AI include accuracy and privacy. I wrote about a few of the ways AI is changing healthcare settings in response to Season 2 of The Pitt, and I was interested to expand my knowledge base on this subject. I was happy to have a recent chat on this topic with fellow Substack writer Erika Warren, who understands AI far better than I do. Erika is the Co-Founder of Inciteful Med, a library reference tool for patients and providers that aims to educate and spur conversation. It seems like AI on the surface, but throughout the course of our conversation, I was pleased to learn more about the product and how patients like me can use it to support our self-advocacy. Neither Erika nor I are trying to sell you anything here. The product is free to use, and you don’t even need to create an account to engage with it if you don’t want to. But after I gave it a trial run, I think there are benefits to this tool, and others like it, that are worth considering and sharing, and I appreciate that Erika took the time to answer my questions so you can learn more about Inciteful Med too. Debra Rafson: Erika, what is the origin story for Inciteful Med? How did the idea come about, and who is the team behind it? Erika Warren: Inciteful Med grew out of another product called Inciteful Academic, which is a free literature-discovery tool my co-founder Mike Weishuhn built six years ago as a side project. While researching something, he was manually tracking the citations and realized he was building a network graph on paper. Being a data scientist, he got way more interested in automating that than in his original topic. So, he created this tool that maps how academic papers connect to one another through citations - think of it like “six degrees of Kevin Bacon” but for academia. It’s a free forever tool that has close to 50,000 monthly users (primarily students, academics, librarians), and has been cited in over 150 peer-reviewed papers across 83 institutions in nearly 40 countries. So, the idea for Inciteful Med later came from necessity. Mike’s family member wasn’t feeling well, got a workup and found nothing except an incidental lung nodule. The standard protocol for a lung nodule is to monitor and recheck in six months. That is not reassuring to a patient or their family member. But instead of Googling or going to Reddit, Mike used Inciteful Academic to search the literature, and he found a paper titled “Multidector CT Features of Pulmonary Focal Ground-Glass Opacity: differences between benign and malignant,” that was published in 2012, and that paper stated nodules with the exact characteristics of his family member carried an 87% malignancy risk. That led to a second opinion at the Cleveland Clinic and a subsequent stage IIIA cancer diagnosis. Needless to say, waiting six months would’ve been catastrophic. That then raised bigger, messier questions like: Why aren’t protocols more specific? How do doctors review current literature? How is new information in research disseminated? Why is patient education so generic? But the actionable one for us was: could we build a tool that uses someone’s specific medical context to surface the relevant literature? And it turns out that, yes, we can. That’s what Inciteful Med is. Debra: I know you’re creating some disease-specific resource guides, in addition to the more general search tool. Thank you for generating one for Hypertrophic Cardiomyopathy (HCM) and asking for my feedback. After testing it out, I can see it serving as a helpful introduction to HCM, especially for someone who is newly diagnosed. I also really liked having the ability to compile a list of questions for my next doctor’s appointment and to take a deeper dive into issues related to my personal situation. What is your plan for disease-specific guides like these as opposed to the more general search features? Erika: Our main product is the personalized research tool where you ask a question, get answers cited from peer-reviewed literature on PubMed, with excerpts and source links so you and your doctor can see exactly where the information comes from. We believe transparency builds trust. You can sync medical records so it connects dots across specialties, which is where I’ve seen patients get the most benefit for their own education and self-advocacy. We’ve recently added clinical trials and drug-interaction data sourced from ClinicalTrials.gov and the FDA, and we’re building alerts that flag and summarize new research relevant to your case. The Patient Guides are different. They are standalone summaries of the literature on a specific condition. The HCM guide you saw pulls from 108 peer-reviewed articles and is organized by patient journey: overview, diagnosis, symptoms, treatment, management, risk, common questions, and leading researchers and institutions on that condition. The idea for Guides came about from an Inciteful Med user. He had reached out to us to share that he’d spent 20 years building his own research library on an ultra-rare sarcoma, called Solitary Fibrous Tumor (SFT), and he was blown away that our tool did a more comprehensive job than his decades of research. Through conversations, we came up with the concept of patient guides, and the SFT guide was the first one we published. We realized that SFT was not unique in its lack of patient education. 1 in 10 Americans (or 30 million people, roughly) live with a rare disease, and there are more than 10,000 known rare diseases, of which Debra: As a mom and a caregiver to your aging parents, how do you find yourself using Inciteful Med in your daily life? Erika: Not to sound dramatic or cheesy, but I’m not sure what I’d do without it at this point. Weekly, it’s our go-to for anything evidence-based – my husband’s looking up creatine, I’m researching perimenopause symptoms, whatever. My parents have their own accounts, and as their medical proxy, I also have them saved as patients with their records synced to my personal account. You can create multiple patient profiles in the tool. That’s mattered most during crises. My mom was in a car accident earlier this year. In the ER, the trauma team wasn’t factoring in her chronic conditions or her records, which directly affected her injuries that she sustained and treatment. I was asking Inciteful Med things like “my mom was in a car accident, what should I tell the doctors about her history?” and because it had ten years of her health history, it surfaced which conditions and medications to flag. I also used it to understand terms I was overhearing in triage (like hypoxic) and as scans were hitting the portal, I was able to interpret them and have questions ready when the doctors came to discuss them with us. In an in-patient setting like a hospital, no news is usually good news, but you can tie yourself up in knots waiting for an update and worrying. I’ve now used it in-patient three times, and each time it gave me an understanding to prep for doctor conversations, ask the right questions, and advocate. I cannot overstate how much calmer my nervous system has felt being proactive, informed, and in the loop. I shared my research with family so they could ask their own questions in the tool, which was a significant and surprising administrative lift off of my shoulders. My parents are in their 70s and they are not especially tech-savvy, but they use it on their own. It’s given them agency. Chronic illness care is often symptom management without a real conversation about quality of life. What matters to them is playing with their grandkid and walking their dog, and the tool has helped them make tradeoffs to protect that, which they didn’t realize was even a choice before. No one’s prepared for a medical crisis. I don’t even think it’s possible to prepare. But having Inciteful Med has directly influenced care for my family members, and it has brought a deeper meaning to the work every day. Debra: There is a lot of skepticism about AI, and I share in some of that skepticism, especially as it relates to writing quality and patient privacy. I know Inciteful Med uses an LLM to aggregate information, but the tool itself is based on medical research and is more like a library reference tool. Can you explain exactly how it works? Erika: Let me start by explaining how LLMs work. LLMs generate text from a probability map of how words relate, built from ingesting huge amounts of text. Given a prompt, they predict the most likely next words - like autocomplete, just much more sophisticated. That means accuracy depends on pattern frequency, not fact-checking. An example I use - Sjogren’s Disease was reclassified from “Syndrome” to “Disease” in June 2025 after close to 10 years of discussion and lobbying, but ChatGPT still defaults to “Syndrome” because that’s what its training data says is more probable. LLMs guess confidently; they don’t verify. That’s what causes hallucinations. It’s expected behavior, not a bug. LLMs are genuinely great at brainstorming and summarization because those are tasks where a good guess is the point. They’re bad at “what” and “why” questions that require actual fact-checking and verification. Inciteful Med uses LLMs only for their strengths. Our core technology is a literature index behind Inciteful Academic. We’ve processed the world’s open-access academic literature for keyword and semantic search. You ask a question, an LLM brainstorms the relevant clinical and research sub-questions, we search the literature for excerpts answering each one (often with hundreds to thousands of excerpts returne

  8. Aug 28

    Wheelchair Tennis Celebrates 50 Years

    “I wonder if you can play tennis in a wheelchair?” In 1976, a college student at the University of Utah got into an accident at a freestyle skiing competition in the Rocky Mountains. Born in Southern California in 1957, this kid who had grown up on water skis and surfboards had chosen to pursue skiing professionally. That day, he was helicoptered to a hospital in Salt Lake City, where he was told he was paralyzed from the waist down due to a “complete spinal cord injury” and would never walk again. After a few months grappling with the initial shock and physical impact of the accident and learning to use a wheelchair, he found himself in a rehab center thinking about how he wanted to be able to play sports with his friends again. Others suggested wheelchair basketball. His response: “I wonder if you can play tennis in a wheelchair?” That 18-year-old was Brad Parks, a 2010 inductee into the International Tennis Hall of Fame and founder of the worldwide sport Wheelchair Tennis, which is celebrating its 50th anniversary in 2026. In an episode of The Tennis Podcast that aired exclusively for their paid “Friends” tier on December 19, 2025, Parks gave an interview, and the hosts discussed his impact on the sport. One of the hosts, Catherine Whitaker, said: “So that’s how it started. In a rehab hospital. Just months/weeks after a devastating, life-altering accident as a teenager. Brad Parks decides he wants to be able to play tennis, and the fact that in order to do that, he needs to create a sport and the means to play that sport out of nothing, does not deter him.” Parks connected first with a former aviation specialist named Jeff Minnenbraker, who taught him to build his own aluminum, aerodynamic wheelchair for tennis. In 1977, he held the first wheelchair tennis exhibition in Los Angeles with 20 competitors participating. Wheelchair tennis had officially transitioned from “therapeutic activity to competitive sport,” as Brad continued to network, politic, and promote that sport. 1981 saw the formation of a player’s association, and the first tournament outside the U.S. was held in France the following year. In 1988, Brad led the creation of the International Wheelchair Tennis Federation. It became a full Paralympic Sport in 1992 and was integrated into the International Tennis Federation in 1998. The most consequential development was Wheelchair Tennis’ inclusion at events on the ATP Tour (men’s professional tennis) and the WTA (women’s professional tennis). The former Lipton tournament (now the Miami Open) was an early adopter in the 1990s. Among the Grand Slams, the Australian Open began showcasing Wheelchair Tennis in 2002. The US Open followed suit in 2005, the French Open in 2007, and finally Wimbledon fully embraced it in 2016. Today, there are more than 170 Wheelchair Tennis events annually in 50 countries across the world. Brad Parks told David Law of The Tennis Podcast, “where we are today is beyond my wildest imaginations.” The types of chairs, the amount of prize money, the number of players. He achieved all of that incrementally, and with lots of help, over 50 years. He says that the players are now seen as “athletes instead of inspirations.” What is Wheelchair Tennis? Let’s look at the logistics of the sport Parks created. According to Wikipedia: “There are three categories: Men, Women, and Quads; each category has singles and doubles tournaments. The Quad, the newest division, is for players who have substantial loss of function in at least one upper limb, but may include various disabilities besides quadriplegia….Quad players often tape the rackets to their hand, to compensate for loss of function…” The International Tennis Federation (ITF), who are re-branding as World Tennis, say “One of the fastest growing wheelchair sports in the world, wheelchair tennis is played in the same way as able-bodied tennis, with the only exception being that a wheelchair tennis player is allowed two bounces of the ball.” Check out a full run-down of the rules here, but in short, the scoring system of Love, 15, 30, 40, etc. applies, and the same courts are used as in non-disabled tennis. Athletes must submit medical data to the ITF and undergo a process of classification, based on their specific upper or lower body physical disability, to ensure they qualify for Wheelchair Tennis and are placed into the right category, which keeps the playing field level. The ITF has a cute video about that process here. In addition to Brad Parks, there are six other Wheelchair Tennis players in the International Tennis Hall of Fame, including 2023 inductees Esther Vergeer (NED) and Rick Draney (USA). If you think Roger Federer, Rafael Nadal, Novak Djokovic, and the Williams sisters are impressive: Vergeer won 559 of her last 560 matches before retiring and was ranked world #1 for 12 years. The Live Wheelchair Tennis Experience In 2024, I attended a Wheelchair Tennis demonstration. Sidling up to the court in my mobility scooter, I joined a small crowd of wheelchair users and non-disabled attendees. Among them was professional WTA player Shelby Rogers (USA), who lives nearby. As dusk fell, she got seated in a loaner tennis wheelchair, to try her hand at this version of the sport for the first time, with the help of members of the United States Tennis Association (USTA). On court with Shelby were regular Wheelchair Tennis players, as well as other newbies who volunteered, and they took turns playing some doubles points. In women’s tennis, Shelby, who has since retired, was very good. At the 2021 US Open, she beat world #1 Ash Barty (AUS) on Arthur Ashe Stadium during a night session in front of 25,000 screaming fans. But seated in the wheelchair, she was unsure how to hold her racket, how to navigate a backhand that required two hands when one had to stay on the wheelchair, and how to make quick positioning adjustments. Shelby took it all in stride and joyfully participated in the demonstration, while I watched intently from the sidelines, feeling too bashful to volunteer to try it myself. Since then, I’ve watched a little bit of Wheelchair Tennis, when it’s available on streaming platforms from the Grand Slam tournaments, and I’ve come to know the names of some of the most accomplished players. But I was keen to learn more. So, in March 2026, I attended the Miami Open, as I’ve done for many years. And this time, I focused one of my days on the inaugural Wheelchair Tennis Invitational Tournament. Two courts were simultaneously hosting Men’s and Women’s wheelchair matches (no Quad Players were in attendance at this event), and I designed a plan whereby I could see as much play on each court as possible. I began with a women’s match between Aniek van Koot (NED) and Angelica Bernal (COL). Next up was Gustavo Fernandez (ARG) vs. Martin de la Puente (ESP), then a change of court to catch men’s singles world #2 and doubles #1 Alfie Hewett (GBR) vs. Daniel Caverzaschi (ESP) and, finally, men’s singles world #1 Tokito Oda (JPN) vs. Charlie Cooper (USA). As they played, I tried to familiarize myself with the sights and sounds of the sport. I knew to expect the two-bounce rule, but there were many sensations I couldn’t have anticipated, which don’t come across on tv. Aniek van Koot had a feisty energy about her, and she stored extra tennis balls in the spokes of her wheels, safeguarding them until her turn to serve arrived. Those large wheels on the side are angled to provide balance and stability, with assistance from smaller wheels at the front and back of the chair. I took note of the way van Koot’s chair kept her left leg tucked back, yet positioned to stabilize her movements, using a guard in front of her shin and a strap around her foot. She was born with her right leg shorter than the left, and a series of unsuccessful surgeries as a kid led to her right leg being amputated above the knee. Throughout the day, I admired how each athlete positioned themselves in the chair to accomplish the same movements, while navigating their individual lower limb differences. Gustavo Fernandez’ enormous biceps showed off his power as he served, demonstrating how much core and upper body strength it takes to successfully complete that motion from a seated position. When his opponent, de la Puente, served, his wheelchair rose up, balanced on one wheel, as he reached to hit the ball, and the sheer force of that service motion caused his whole chair to come crashing back down with a bang, just before he zipped away to hit Fernandez’ return. In professional tennis, one-handed backhands are becoming increasingly rare, but in Wheelchair Tennis they are required. One hand must be on the wheelchair at all times, keeping it spinning and moving. Alfie Hewett, who is magnetic to watch, had such a smooth backhand and a quick spinning motion, never losing sight of the ball as he did a 360 and sped back towards it to win easily against Caverzaschi. Tokito Oda, too, has a beautiful backhand. Yet, with Oda, I found myself studying his chair. Like the other players, his had a low back and angled wheels, but this was a customized chair, featuring black and red rims. Part way through his match against Charlie Cooper, Oda signaled to the chair umpire that he needed assistance. I’m accustomed to seeing physiotherapists called to the court to assist injured or ill players. This, however, was a visit from a mechanic for his wheelchair, and the mechanic was the unassuming gentleman in his own wheelchair who happened to be sitting right next to me during the match. He wheeled right out onto the court with his repair kit and had Oda playing again in no time. I’ve written before about the losses or damage that can occur when an airline mishandles a mobility device. During that mechanical time out, I couldn’t help but wonder how these professional athletes, who spend the year travelling th

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About

“What’s Her Problem?” Podcast is the audio version of writer and patient advocate Debra Rafson's weekly Substack newsletter tackling Issues at the Heart of Chronic Illness and Disability through personal essays, interviews, opinion pieces, and more! whatsherproblem.substack.com

Information

  • Creator
    Debra Rafson
  • Years Active
    2025 - 2026
  • Episodes
    60
  • Rating
    Clean
  • Copyright
    © Debra Rafson, The Open-Hearted Advocate LLC
  • Show Website
    "What's Her Problem?" Podcast