Years of pain – a dim look into a future that might have included a feeding tube or motorized scooter – and being dismissed frequently by the health system – underscore medicine’s shortcomings. The journey from worsening digestive function and painful neuropathy to post-surgical relief highlights an essential truth: The patient’s voice is a critical diagnostic tool, yet it is too often ignored or undervalued.

In two prior published pieces for Medika Life, I explored the challenges of diagnostic complexity and health-systemic fragmentation. In Looking for Zebras, I wrote about medical mysteries and how patients with rare or atypical conditions are often dismissed or misdiagnosed in a system designed to manage the average, not the exceptional. In We Know the Health Ecosystem is Fragmented, Resulting in Rising Costs and Poorer Patient Outcomes, But What Are We Doing About It, I called for centering health delivery around patient outcomes – Health System Kinetics – emphasizing treating patients as whole people rather than their isolated symptoms.

Now, I revisit these themes with renewed urgency and a personal lens, advocating for a health system that listens—to patients, advocates, and their potential to improve people’s lives and reduce care costs.

Listening to the Patient: A Missed Opportunity

For many years, my young adult experienced worsening neuropathy—moving from occasional discomfort to using a cane and eventually a walker. Despite multiple consultations and MRIs, no definitive diagnosis emerged. Physicians, each specialized in their narrow field, treated her symptoms piecemeal: one focused on her spine, another on her joints, and yet another on her nervous system. The resolution was to vary pain medications to address symptoms, adding medicines on top of medicines. The bigger picture was lost in translation, as no single practitioner took ownership of connecting the clinical dots.

This experience is symbolic of the “silo effect” in medicine. Specialization has undoubtedly advanced and, at the same time, compartmentalized the field, creating gaps where Zebra-like conditions like hEDS fall. Worse, when patients like my child describe their experiences—pain, immobility, or even emotional distress—physicians begin to roll their eyes – the worst clinical response. Doctors like patient problems that are easy to fix.

In our case, it took a patient advocate—someone who personally understood hEDS—to guide us toward the right questions and the right specialists. Her lived experience as both a patient and an expert in navigating the system became the linchpin for my child’s eventual on-point diagnosis and treatment. This advocate understood what the health system did not: The interdependence of symptoms and the importance of listening to the patient and looking at the non-obvious puzzle piece.

The Power of Patient Advocacy

Patient advocates bridge the chasm between clinical expertise and lived experience. They translate medical jargon, connect patients with appropriate specialists, and, most importantly, validate the patient’s voice.

In listening to the advocate, I heard the voice of my late father-in-law, Burton Giges, MD, a brilliant clinician who always asked a critical question when addressing complex clinical cases: “What is the underlying cause of the symptoms?” However, as a parent, I was skeptical of the non-medically trained patient advocate who suggested root causes for GI problems whose resolution required surgery. One doctor we consulted from a noted teaching hospital even confronted us, “Who are you going to believe a patient or me?”

Thankfully, we pursued the patient advocate’s counsel and eventually traveled to California to MALS Surgical Specialist Dr. Danny Shouhed. The outcome was a successful MALS surgery to relieve pressure on the celiac artery and restore normal GI blood flow, resulting in normal digestive function. But, like many rare conditions, the medical maze continued.

Our advocate’s role went beyond logistics; she gave us hope when the system offered none. Her guidance led us to a team of specialized neurosurgeons at Brown University Rhode Island Hospital and Patricia Leigh Zadnik Sullivan, MD, Director of the Center for Spine Tumor and Chordoma Research, who confirmed the tethered cord syndrome diagnosis and later performed this complex surgery. Post-operative improvement was almost immediate: reduced neuropathic pain, increased mobility, and a promising sense of physical autonomy not experienced in years.

This transformative outcome raises a critical question: Why did it take an outsider to achieve what the health system itself should have delivered? Advocacy shouldn’t be a workaround but a core component of care.

Reordering Priorities: Outcomes Over Office Visits

The fragmented state of health is not just a disservice to patients; it’s a detriment to the system itself. Rising costs and poor outcomes are direct consequences of this disjointed approach. Each specialist operates within their silo, often incentivized by metrics like the volume of patients seen or procedures performed rather than by long-term outcomes.

In Reordering the Health System’s Priorities, patient outcomes must become the central organizing principle of health access and delivery. This isn’t just a lofty ideal; it’s a practical necessity. A system focused on outcomes would:

1. Promote interdisciplinary collaboration. Specialists must be empowered and incentivized to collaborate, share insights, and co-develop treatment plans.
2. Integrate patient voices. Patients are not passive recipients of care; they are active participants. Their experiences, preferences, and insights must inform individual care plans and broader systemic improvements – not given lip service.
3. Leverage data intelligently. Electronic health records and diagnostic technologies generate vast amounts of data, but it is only valuable if synthesized into actionable insights. Medical teams must use technologies – AI, ChatGPT, and LLMs to connect dots and see patterns that might usually be overlooked.

Had these principles been in place, my child’s correct diagnosis might have come months, even years, earlier. Instead, it took an advocate outside the system to untangle the threads.

The Hidden Costs of Ignoring Patients

When the health ecosystem discounts patient experience, it fails individuals and incurs added costs. Delayed diagnoses lead to prolonged suffering, reduced quality of life, and higher medical expenses. For our family, years of neuropathy meant not only physical pain but also the emotional toll of feeling unheard and unseen.

Moreover, the economic implications are staggering. Treating symptoms in isolation often leads to more office visits, redundant tests, unnecessary procedures, and avoidable complications. A study published in Health Affairs estimated that diagnostic errors alone cost the US health system billions annually, to say nothing of the human cost.

Listening to patients isn’t just compassionate; it’s cost-effective. Their insights can streamline diagnostic processes, reduce unnecessary interventions, and improve adherence to treatment plans—all of which contribute to better outcomes and lower costs. But to make that possible, medical teams need to be trained differently and incentivized to listen – not just hear words.

Transforming the System – Three Tips to Make Healthcare More Caring

So, how do we create a health system that listens?

1. Train Physicians to See the Whole Person

Medical education must evolve to emphasize holistic, patient-centered care. This means training doctors to consider the interplay of physical, emotional, and social factors—and to listen deeply to their patients. Breaking down silos requires structural changes, such as multidisciplinary clinics where specialists work side by side, sharing insights and jointly managing complex cases.

2. Integrate Advocacy into the Care System

Patient advocacy should be institutionalized, not incidental. Hospitals and clinics should employ patient advocates as part of care teams, ensuring every patient can tap into a guide to navigate the system’s complexities.  Payers should consider employing patients who can objectively call upon their experiences to ask questions as ambassadors for better care.

3. Measure What Matters

Health organizations must redefine success metrics. Instead of focusing on patient volume or efficiency, they should prioritize metrics that reflect patient well-being, such as functional outcomes, quality of life, and patient satisfaction. My child can now feel surfaces with their feet – impossible before because of painful neuropathy. They feel they are “walking on the moon.”

Communication is Part of the Care

Like many others, our journey highlights the system’s failures and amazing potential. It is a sobering reminder that while medical science has made extraordinary strides, it is still fallibly human. We look to the magic of AI, ChatGPT, and LLMs to resolve problems, but in our rush to innovate and specialize, we have lost sight of the most fundamental aspect of care: listening.

Patients are not puzzles to be solved or cases to be closed; they are people with stories, insights, and wisdom to share—they hope for a healthier future. By listening, we can bridge the gaps in care, transforming outcomes and the experience of the care journey.  

As we look forward, remember that the most powerful diagnostic tool is not a test or a scan but the patient’s voice. Let us not dismiss it – but use it.

[My gratitude to the Marfan Foundation, Nieca Goldberg, MD, CNS Summit, Rachel Lee, Patient Advocacy Consulting, FINN Partners, Danny Shouhed, MD, Residence Inn by Marriott, and the many patient advocates I’ve met through the years who champion the voice of people in the care trenches]

The post Looking for Zebras: Listening to Patients, Healing the Health System appeared first on Medika Life.

The Marfan Foundation is the world’s most extensive patient and professional community addressing the needs of people living with genetic aortic and vascular conditions, serving one million people with educational materials and reaching 3.2 million people in the digital space annually.

The Marfan Foundation will play a crucial role in informing individuals living with Marfan, Loeys-Dietz, Vascular Ehlers-Danlos syndromes, and related conditions about the resources and community dialogue offered by StuffThatWorks. This collaboration will enable StuffThatWorks to develop a comprehensive strategy for engaging non-profits with the goal of ultimately benefiting the global patient community.

“We’re honored to have been selected as the first non-profit to align with StuffThatWorks to elevate community members’ voices, foster additional personal empowerment, and advance access to potential learnings that may be derived through global self-reporting,” said Michael L. Weamer, CEO of The Marfan Foundation.

StuffThatWorks’ operational value is that patients’ crowdsourcing information can highlight issues that need to be addressed from the patient perspective as well as spotlight various treatment options, side effects, and obstacles to care: “Understanding how patients experience various treatments is one of them,” according to their website. “The Marfan Foundation has a steadfast commitment to scientific rigor and fostering a strong global community. Operationally, the Foundation leverages world-class experts to focus on research and best practices in patient engagement and empowerment,” says Yael Elish, CEO of StuffThatWorks. “The Foundation’s investment in basic and applied research and translating these understandings into patient support and education reinforces that real-world data is valued in applications with the potential to advance treatments and quality of life.”

“We’re enthused to share what we know about specific non-profit needs and goals while we learn more about the possibilities StuffThatWorks’ patient-centric knowledge-base will offer,” said Weamer.

About 1 in 5000 people have Marfan syndrome, including men and women of all races and ethnic groups. Roughly 3 out of 4 people with Marfan syndrome inherit it. There is a 50 percent chance that a person with Marfan syndrome will pass along the condition each time they have a child. Because connective tissue is impacted and found throughout the body, Marfan syndrome can affect many body parts. Features of the condition are most often found in the heart, blood vessels, bones, joints, and eyes. Some Marfan features – for example, aortic enlargement (expansion of the main blood vessel that carries blood away from the heart to the rest of the body) – can be life-threatening. People living with Marfan syndrome and related conditions have a 250 times greater risk of aortic dissection than the general public. The lungs, skin, and nervous system may also be affected.

About StuffThatWorks

Created by Waze founding team members, StuffThatWorks uses crowdsourcing and AI to empower patients to transform their experiences into organized, large-scale structured Real-World Data needed for research. StuffThatWorks is the home to three million members across 1250 condition communities that have shared 1.3B data points. Now the largest organized Patient Level Real World Data platform, StuffThatWorks is differentiated by its expansive data collection, structuring, and organization of accessible information. The unique proprietary data set and unique AI and powerful Chat GPT-like capabilities enable the generation of insights for research, market access, and drug development.

Crowdsourcing Treatments that Work | Community Research | StuffThatWorks

About the Marfan Foundation

The Marfan Foundation is a global nonprofit organization that empowers people with genetic aortic and vascular conditions to foster optimal quality of life and longevity while building community. We save lives through research and education, enabling healthcare providers to offer the best-quality treatment and helping to foster mental and physical wellbeing. We serve communities impacted by Marfan syndrome, Loeys-Dietz syndrome, Vascular Ehlers-Danlos Syndrome, and related conditions. To learn more, visit marfan.org or meet us on social media:

Facebook | Instagram | LinkedIn | X (Twitter) | Threads | YouTube | TikTok

The post StuffThatWorks and The Marfan Foundation to Engage in Pilot Program appeared first on Medika Life.

His wife, Dr. Celine Gounder, says, “it’s just one of these things that had been brewing for years, and for whatever reason, it happened at this point.” She explained the findings on “CBS Mornings” in her first interview since her husband’s passing.

Grant Wahl’s wife reveals the cause of death in the first interview since he died at World Cup in Qatar.

www.cbsnews.com

Following an autopsy performed by the New York City Medical Examiner’s Office, we learned that he died from “the rupture of a slowly growing, undetected ascending aortic aneurysm with hemopericardium.”

Dr. Gounder explains that “the chest pressure he experienced shortly before his death may have represented initial symptoms. No amount of CPR or shocks would have saved him.”

Grant Wahl’s remarkable life

Born in Mission, Kansas (USA ) in 1973, Wahl graduated from Princeton University. During his first year, he covered Princeton’s men’s soccer team, then coached by Bob Bradley, who would go on to manage professional soccer teams.

Bradley opened the door for Wahl to study abroad in Argentina. Wahl spent time with the Boca Juniors before returning to the United States for the 1994 FIFA World Cup. Wahl volunteered that his experiences with the veteran coach catalyzed his love of soccer.

Wahl began his journalism career with the Miami Herald as an intern in 1996. He joined Sports Illustrated in November 1996, covering college basketball and soccer. Here are some of his reporting career highlights:

• 12 NCAA basketball tournaments
• Eight FIF Men’s World Cups
• Four FIFA Women’s World Cups
• Five Olympic games

Wahl first gained critical acclaim for his Sports Illustrated cover story “Where’s Daddy?” a look at the growing number of illegitimate children born to professional athletes.

MIT Sloan Sports Analytics Conference Speaker | Grant Wahl

Senior Writer, Sports Illustrated Grant Wahl is one of the world’s leading soccer journalists. Comfortable writing long…

www.sloansportsconference.com

Notable among his stories was a 2002 one with high school student and future basketball superstar LeBron James. Here is James speaking about Wahl:

“He was always pretty cool to be around. He spent a lot of time in my hometown of Akron. Whenever his name comes up, I’ll always think back to me as a teenager having Grant in our building down at St. V’s. It’s a tragic loss. It’s unfortunate to lose someone as great as he was. I wish his family the best. May he rest in paradise.

In October 2009, while covering the 2010 FIFA World Cup qualification, Wahl was robbed of his phone and wallet at gunpoint in broad daylight in Tegucigalpa, Honduras; earlier in the day, he had interviewed interim Honduran president Roberto Micheletti, who later apologized to Wahl over the incident.

Meet the President, Get Robbed: Just Another Day in Honduras | Grant Wahl’s Blog | FanNation.com

TEGUCIGALPA, Honduras — For a few minutes on Friday night, Honduran interim president Roberto Micheletti sounded happy…

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Wahl and aneurysm

An aortic aneurysm is a balloon-like bulge in the aorta, the body’s largest artery — “sort of the trunk of all the blood vessels,” explains Wahl’s wife, Dr. Gounder. She is an infectious disease specialist and CBS News medical contributor. An aortic aneurysm can “dissect” or — as in Wahl’s case — rupture.

Aortic aneurysms can dissect or rupture:

• The force of blood pumping can split the artery wall’s layers, allowing blood to leak between them. This process is called a dissection.
• The aneurysm can burst completely, causing bleeding inside the body. This phenomenon is a rupture.
• Dissections and ruptures are the cause of most deaths from aortic aneurysms.

According to the United States Centers for Disease Control, aortic aneurysms or dissections caused about 10,000 deaths in 2019. Approximately three in five were among men. A history of smoking accounts for about 75 percent of all abdominal aortic aneurysms.

Thoracic aortic aneurysm

Grant Wahl had a thoracic (in the chest) aortic aneurysm burst. Men and women are equally likely to get thoracic aortic aneurysms. The condition becomes more common with increasing age.

Thoracic aneurysms are typically caused by high blood pressure or sudden trauma. Some inherited conditions, including Marfan syndrome and Ehlers-Danlos syndrome, are associated with a higher incidence of the condition.

The CDC offers these symptoms of thoracic aortic aneurysm:

• Sharp, sudden pain in the chest or upper back
• Shortness of breath
• Difficulty breathing or swallowing

Abdominal aortic aneurysm

An abdominal aortic aneurysm occurs below the chest. Abdominal aortic aneurysms (AAA) are more common than thoracic aortic aneurysms. AAAs are more common in men and those 65 and older. White individuals are more likely to have them (compared with Black people).

Abdominal aortic aneurysms are usually the product of atherosclerosis (hardened arteries), but infection or injury can also cause them. Unfortunately, AAAs often don’t have associated symptoms. When symptoms do occur, they can include groin, buttocks, or leg pain. Some have throbbing or deep pain in the side or back.

Other aneurysm types

Aneurysms can occur in other body sites. For example, a ruptured brain aneurysm can cause a stroke. Aneurysms may be discovered in the neck, groin, or behind the knees. Such aneurysms are less likely to dissect or rupture but can be associated with clots. The clots sometimes break away ad block blood flow through an artery.

Aortic aneurysm risk factors

The leading risk factor for an aortic aneurysm is smoking. Other risk factors include high blood pressure (hypertension), high cholesterol, and hardened arteries (atherosclerosis). Here are some potential risk-reducing maneuvers you may wish to consider:

• If possible, keep your blood pressure below 130/80 mm Hg.
• Don’t smoke.
• Have a healthy diet.
• Get regular physical activity.
• If you have an aneurysm discovered by screening (or chance), please see a specialist who can monitor your condition. Monitoring may include periodic imaging (for some, a procedure to lower the rupture risk).

Inherited connective tissue disorders, such as Marfan syndrome and Ehlers-Danlos syndrome, can also increase your aortic aneurysm risk. A family history of aortic aneurysm is also linked to a higher risk.

Finally, the US Preventive Services Task Force recommends an ultrasound screening for abdominal aortic aneurysms in men between the ages of 65 and 75 who have smoked.

I will end with the words of his wife, Dr. Céline Gounder:

“I want people to remember [Grant] as this kind, generous person who was really dedicated to social justice.”

Thank you for joining me for this brief look at the life of Grant Wahl and aneurysm risk reduction.

The post Soccer Journalist Dies of an Aneurysm – Five Ways to Reduce Risk appeared first on Medika Life.