Symptomatic: A Medical Mystery Podcast

Episode: Case #28: Ian
Date: November 18, 2025
Host: Lauren Bright Pacheco
Guest(s): Ian Stedman, Barbara Stedman, Dr. Ronald Laxer

Episode Overview

This episode explores the decades-long medical mystery faced by Ian Stedman, his mother Barb, and eventually his daughter, all suffering from mysterious, debilitating symptoms. The episode delves into their struggles for recognition, diagnosis, and effective treatment, culminating in a multi-generational breakthrough that saved—and transformed—their lives.

Key Discussion Points & Insights

Ian and Barb’s Early Experiences with Chronic Illness

• Early Childhood Symptoms

  • Ian: Frequent skin rashes, headaches by middle school, and the need to hide visible symptoms.

    "There was one day my eyes were so flared I couldn't see." — Ian Stedman [00:06]

  • Barb: Lifelong headaches, joint pain, rashes, and a sense of worry watching the same unfold in her son.

    "When he was only a few months old...he would come in with red blotches all over his body. And I thought...it must be the sun. But then it would happen inside..." — Barbara Stedman [03:09]

• Coping and Isolation

  • Ian felt alone with his symptoms, often dismissed by doctors, and grew skilled at hiding his condition.

    "Kids show up to hockey, they get changed in the dressing room. I didn’t. I showed up to hockey covered, right? … Got to a point where I just wouldn’t wear T-shirts or shorts anymore." — Ian Stedman [05:20]

• Medical Dismissal

  • Both Ian and Barb repeatedly encountered uncertainty and misdiagnosis.

    "The explanation was always basically the scientific way of saying, I don't know. So chronic idiopathic urticaria..." — Ian Stedman [06:40]

Searching for a Diagnosis

• Impact on Life Trajectories

  • Ian’s symptoms shaped his education and career choices, favoring environments where attendance wasn’t mandatory.

• Giving Up on Answers

  • After years of fruitless doctor visits, Ian resigned himself to living with unexplained symptoms.

    "At the point when I went to join the workforce, I had totally given up on searching for answers. I figured the answer is, I've just got to navigate this." — Ian Stedman [10:30]

• Medical System Challenges

  • Dr. Laxer contextualizes the tendency for patients to be passed between various specialists without connecting the dots.

    "It's kind of like the blind man and the elephant...everybody sees a different part and calls it a trunk or a tail or a limb." — Dr. Ronald Laxer [12:08]

A New Generation, Renewed Urgency

• Daughter’s Birth and Recognizing the Patterns

  • At the birth of his daughter Leah, Ian and Barb immediately recognized the rash; the family legacy of illness was undeniable.

    "I saw her skin. It looked like what I had. She was born basically with red blotches on her skin." — Ian Stedman [14:30] "It looks exactly like what we have. And I looked at Ian and we just nodded. We knew. We knew she had it." — Barbara Stedman [16:07]

• Turning Point

  • Leah loses the ability to walk before her first birthday, prompting Ian’s determination to finally find answers.

    "That was the day the deep feeling of failure set in but turned into a motivation which was, it's not good enough for me to not have answers anymore." — Ian Stedman [17:19]

The Breakthrough: self-advocacy and Diagnosis

• Becoming His Own Detective

  • Ian combs medical journals, dermatology papers, and ultimately, Google Images for symptoms resembling his family’s, leading to the discovery of "Muckle Wells Syndrome".

    "I found one picture in Google Images that looked like me." — Ian Stedman [20:32] "I saw it, I clicked it, and then it took me to a man's blog who is German...What I could read was...Muckle Wells Syndrome." — Ian Stedman [22:00]

• Connecting with Dr. Laxer

  • A timely email to Dr. Ronald Laxer—Canada’s leading autoinflammatory disease expert—finally results in validation and a path forward.

    "This is the first time I’ve ever spoken to a medical professional and felt like they listened and understood something and believed me was him replying, saying, I think you’re onto something." — Ian Stedman [27:10]

• Official Diagnosis

  • Genetic testing confirms Muckle Wells Syndrome for Leah, Ian, and Barb, bringing closure and new questions.

    "One in three people untreated with Muckle Wells just don’t wake up...I may have avoided death because my daughter was born sick." — Ian Stedman [23:57]

Understanding and Treating Muckle Wells

• Doctor’s Explanation

  • Muckle Wells is a genetic, autoinflammatory disease causing inappropriate immune responses.

    "Mucklewell syndrome is part of a group of disorders which are genetic in origin...may kick off an inflammatory cascade that leads to all the signs and symptoms of fighting off an infection. But there’s nothing there." — Dr. Ronald Laxer [24:51]

• Treatment

  • No cure, but highly effective (and expensive) immunosuppressant drugs can neutralize symptoms.

    "There’s an injectable drug that plugs the protein...$16,000 every eight weeks for this needle that effectively takes away my one in three chance of death by 36." — Ian Stedman [34:35]

• Barriers to Care

  • Insurance and policy hurdles abound, and advocacy is crucial for life-sustaining access.

    "The first time we submitted under her plan, they denied us... Dr. Laxer...wrote them, he got their decision reversed and we started to see formularies. Now my mom's formulary had it. And then slowly over time, every major formulary in Canada has added this drug." — Ian Stedman [37:01]

Transformative Results and Ongoing Advocacy

• Immediate Impact

  • The medication is described as "a light switch"—symptoms disappear virtually overnight.

    "So we took the medicine, we woke up the next day and it was a light switch. It was all gone the next day." — Ian Stedman [38:09] "The day I got my first needle was the last day I had pain, last day I had a headache, last day I had hives." — Barbara Stedman [38:16]

• A New Lease on Life

  • Barb now leads a walking group in her 70s, Leah has never had to know the shame of visible illness, and Ian can finally wear shorts in public without thinking about it.

    "I just went grocery shopping in shorts and a T shirt, and it's such a nothing burger. But it was so much." — Ian Stedman [45:23]

• Perspective and Reflection

  • Despite decades of struggle and uncertainty, the family emphasizes resilience, compassion, and the importance of patient-driven advocacy.

    "Who we are is and what happens to us is who makes us who we are. I learned how to deal with pain. I learned how to be more compassionate to others because my pain was invisible." — Barbara Stedman [42:45] "I feel relief in the idea that maybe I was able to pay her...to give her something in return for that, which must have been an impossible effort on her part..." — Ian Stedman [43:28]

Notable Quotes & Memorable Moments

• On Medical Dismissal:

  "It was the scientific way of saying, I don't know." — Ian Stedman [06:40]

• On Parental Guilt and Motivation:

  "Immediately, you failed as a parent. The second feeling you have is, I failed them. They don't know it yet, but I failed them because I didn't figure this out first." — Ian Stedman [18:15]

• On Finding Community and Validation:

  "No one's ever cared before, right?...I wasn't just a chronic idiopathic Stedman. Not anymore." — Ian Stedman [30:26]

• Promise of Healing:

  "One of the most vivid memories I have...is him turning to me while I'm sitting there in my underwear and saying, we'll have you in shorts by summer." — Ian Stedman [32:13]

• On the Power of Stories in Medicine:

  "I think storytelling has become a much more important part of medicine, much more prominent role in education, getting people to tell their stories." — Dr. Ronald Laxer [30:53]

• On Advocacy and Systemic Change:

  "With Dr. Laxer's help, we petitioned my wife's employer's formulary to add the drug...slowly over time, every major formulary in Canada has added this drug." — Ian Stedman [36:14, 37:01]

Important Timestamps

• Ian’s Early Symptoms & Family History: [01:19]–[07:59]
• Adolescence, Coping, and Medical Uncertainty: [08:48]–[12:53]
• Leah’s Birth & Recurrence Through Generations: [14:00]–[18:31]
• Research and Breakthrough: [19:24]–[22:33]
• Discovery of Muckle Wells Syndrome: [22:33]–[25:39]
• Diagnosis and Meeting Dr. Laxer: [25:50]–[31:39]
• Treatment and Advocacy: [34:06]–[37:53]
• Immediate Impact of Medication: [38:09]–[39:48]
• Reflections, Advocacy, and Looking Forward: [40:36]–[45:23]
• Full-circle Moment: Ian in Shorts & T-shirt: [45:23]

Takeaways

• The struggle for a diagnosis profoundly affects not only patients, but entire families over generations.
• Persistence, informed self-advocacy, and compassionate medical partnerships are critical in rare disease journeys.
• Achieving a diagnosis—even for an incurable disease—can bring empowerment, relief, and practical change.
• Access to life-saving medications remains an ongoing battle, requiring both personal and systemic advocacy.
• Sharing patient stories is not just cathartic but essential for medical progress, understanding, and compassion.

Resources:

• Canadian Autoinflammatory Network
• SickKids Hospital