Symptomatic: A Medical Mystery Podcast
Episode Summary: Case #31 – Kristen
Date: December 9, 2025
Host: Lauren Bright Pacheco
Featured Guests: Kristin Willard, Stephanie, Dr. Payel Gupta
Episode Theme & Purpose
This episode unravels the long and agonizing journey of Kristin Willard, whose decades-long battle with mysterious, debilitating rashes and relentless itching left her and her doctors searching for answers. Host Lauren Bright Pacheco guides listeners through Kristen’s personal ordeal—from her first alarming symptoms through years of misdiagnoses and despair, to the ultimate relief of a confirmed diagnosis: Chronic Spontaneous Urticaria (CSU). The episode provides hope for chronic illness sufferers while demystifying CSU with expert insight from Dr. Payel Gupta and passionate advocacy from both Kristin and her friend Stephanie.
Key Discussion Points and Insights
1. Introduction to Kristin and Her Background
- Kristin introduces herself as executive director at We See U and Vice President of Education for GAAPP (Global Allergy and Airways Patient Platform). Her early life, global experiences, love of dogs, and interest in forensic psychology are discussed (01:17–03:15).
- Kristin’s foray into patient advocacy was influenced by her research background and her father's battle with COPD.
"Health has always been my interest." – Kristin Willard (03:20)
2. The First Symptom: An Alarming Rash
- First outbreak in her 20s: Kristin describes waking up with a bright red, relentless rash in the exact shape of her bra and underwear after using a new laundry detergent (04:04–04:58).
- Initial medical response: Treated as an allergic reaction to detergent with steroids and antihistamines. Symptoms went away and were dismissed as a one-time fluke.
3. The Mystery Deepens: Recurring Episodes and Suffering
- Symptoms worsen and spread in her 30s; rashes migrate unpredictably and are often accompanied by painful swelling (07:54–08:10).
- The physical and emotional toll:
“It feels to me as if someone has removed all my skin, truly, all my skin down to the muscle, and then covered me in a wool blanket, like a mohair blanket.” – Kristin Willard (08:50)
- Desperation and disruption: Episodes leave her unable to function, causing physical incapacity and emotional distress (09:42–11:45).
4. Detective Work: Searching for Triggers
- Kristin and friend Stephanie hunt for a cause, meticulously tracking exposures, foods, and environmental factors. Multiple allergy tests return negative (10:34–11:45).
- Frustration and self-blame:
“Everything becomes a potential demon, right?” – Kristin Willard (12:29)
5. The Toll of Chronic Illness
- Endurance and exhaustion: Kristen describes adjusting her life to persistent flares (16:12–16:41).
- Emotional breaking point:
“I can remember it very vividly. This was in my 40s and I was on the couch and I was so miserable that I remember thinking to myself, I understand why people kill themselves.” – Kristin Willard (17:24, 19:37)
6. Medical Insights: What is Itch?
- Expert perspective from Dr. Payel Gupta: Explains itch as a complex neurological response, which can create a vicious cycle for chronic patients (14:19–14:57).
7. The Diagnostic Odyssey and Feeling Unheard
- Endless attempts for relief with steroids, antihistamines, and anti-inflammatories. Doctors are baffled; symptoms continue for months at a time (15:14–16:41).
- Invisibility and not being taken seriously: Stephanie addresses the stigma chronic invisible illnesses bring when seeking care (20:39–22:26).
8. Breakthrough: Finding the Right Doctor and a Name
- Finally, a specialist listens: Kristin arrives prepared with evidence and descriptions but finds a doctor who immediately recognizes her suffering as CSU (24:03–24:44).
- The moment of diagnosis:
“She said, I have chronic spontaneous urticaria.” – Kristin Willard (24:44)
What is Chronic Spontaneous Urticaria?
- Dr. Gupta explains:
"It's a condition where you've had hives for at least six weeks or longer... Hives are caused by a chemical called histamine... and histamine can be released because of an allergic reaction, but it can also be released outside of an allergic reaction." (24:59–25:43)
- No apparent trigger: CSU is now considered autoimmune or autoallergic in many cases.
9. The Power of Diagnosis
- Emotional relief:
"It was so freeing for me... I could stop trying to figure out what it was... It was just something my body was doing." – Kristin Willard (27:07)
- Stephanie’s perspective:
“There was so much relief, so much relief in just having the name.” – Stephanie (28:29)
10. Modern Treatments: Biologics and New Medications
- Introduction to biologics: Targeted therapies offer hope where antihistamines failed (29:55–31:48).
- Medical evolution: Dr. Gupta highlights how treatment options have expanded beyond antihistamines, revolutionizing CSU care (30:14–31:19).
- Kristin’s journey with biologics: Initial disappointment turns to jubilation after six months, when symptoms vanish (32:50–34:10).
"In my mind, it's almost as if a switch flipped at six months... and my hives were gone. Absolutely gone.” – Kristin Willard (34:10)
11. Life After Treatment
- Regaining quality of life:
“One of the best things in life is being in a hot shower... and that was absolutely intolerable. What a gift it is that I can have water touch my skin without misery.” – Kristin Willard (35:22)
- Living in remission: Kristin still keeps antihistamines on hand but no longer fears flares (34:39–34:54).
12. Meaningful Advocacy
- Advocacy roots: Inspired by her father, Kristin is now an active figure in patient advocacy, aiming to empower those with chronic urticaria and other illnesses (36:08–37:12).
- The importance of community and listening:
“It is amazing what we can do for each other, how we can empower each other, educate each other... The power of patient advocacy is, I feel, limitless.” – Kristin Willard (37:12)
13. Provider Perspective and Hope for the Future
- Dr. Gupta on compassionate care: Validating the impact of “non-life-threatening” diseases is crucial (38:33–39:13).
- Emerging therapies: Rapid developments like BTK inhibitors are expanding options and hope (39:13).
- Parting message:
"There is hope. There is hope." – Kristin Willard (41:35)
Notable Quotes & Memorable Moments
- Kristin on the agony of uncertainty:
“Everything becomes a potential demon, right?” (12:29) - The lowest point:
“I understand why people kill themselves. I understood how they could feel like there was no future if it didn’t stop.” (17:24, 19:37) - Stephanie on friendship and support:
“She really is just one of the most beautiful people I’ve ever met.” (06:47) - Stephanie as a friend-detective:
“All you want to do is find the thing, find the magic wand that’s going to take all of this away. And we just couldn’t find it.” (13:17) - Dr. Gupta on finally diagnosing CSU:
“Those are the good days... when a patient finally gets relief, it is very rewarding and everyone feels so good.” (27:50) - Kristin on advocacy:
“No one knows you better than you know yourself. But a close second is somebody who experiences what you experience when it comes to a chronic disease... That peer to peer advocacy is irreplaceable.” (41:35)
Important Timestamps
| Timestamp | Segment/Theme | |-----------|---------------| | 01:17–03:15 | Kristin’s background and early interests | | 04:04–04:58 | First rash outbreak and medical response | | 07:54–08:10 | Recurring rashes and escalation of symptoms | | 10:34–11:45 | Search for triggers and negative test results | | 17:24, 19:37 | Kristin’s lowest emotional point | | 14:19–14:57 | Dr. Gupta explains “the itch” | | 24:03–24:44 | Kristin meets her specialist, diagnosis made | | 24:59–25:43 | Dr. Gupta defines CSU | | 29:55–31:48 | Treatment options and first biologic | | 34:10 | The moment of remission | | 35:22 | Kristin describes life post-treatment | | 37:12 | Power of patient advocacy | | 39:13 | Dr. Gupta: new CSU therapies emerging | | 41:35 | Kristin’s message of hope |
Takeaways for Listeners
- Chronic illnesses often go undiagnosed and misunderstood, leading to immense physical and emotional suffering.
- Persistent advocacy—both personal and with healthcare providers—is critical. Finding the right doctor can change everything.
- Medical science is advancing. Conditions once deemed untreatable or “just hives” now have effective, targeted therapies.
- Community and patient advocacy provide hope, empowerment, and life-changing support.
Resource links shared:
The episode ends with a powerful message:
"Your life does not have to be like this. There is hope. I'm Kristin Willard, and it took me until my 40s to figure out that I had chronic spontaneous Urticaria and I am now a patient in remission and could not be happier to say that." (41:35)