Case #31: Kristen

Summary

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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

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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.

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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)

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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)

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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 |

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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.

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Resource links shared:

• WE CU – Chronic Urticaria Organization
• Global Allergy and Airways Patient Platform

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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)

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Transcript

[Stephanie]

Ruby.

[Kristin Willard]

It feels to me as if someone has removed all my skin down to, like, the muscle, and then covered me in a wool blanket like a mohair blanket.

[Stephanie]

The thought of this world not having her in it, that's just unbearable.

[Dr. Payel Gupta]

They'll be in this kind of cycle of trying to find relief and really suffering and ending up in the emergency room or urgent care.

[Kristin Willard]

And you're always looking over your shoulder, when is this going to happen again?

[Lauren Bright Pacheco]

How terrifying would it be to fight an unknown enemy, one you didn't recognize and didn't see coming? What if that enemy was coming from within, a disease that even doctors couldn't identify? Nearly half of Americans suffer from some chronic illness, and many struggle for an accurate diagnosis. These are their stories. I'm Lauren Bright Pacheco, and this is Symptomatic.

[Kristin Willard]

My name is Kristin Willard. I am the executive director at We See youe, which is a US Nonprofit, and I also oversee education for an organization called gap, the Global Allergy and Airways Patient Platform.

[Lauren Bright Pacheco]

An excellent listener, full of curiosity about others, Kristin is one of those people who immediately feels like an old friend. She loves dogs, has a thirst for knowledge, and is driven by a desire to help others.

Kristen, where are you originally from?

[Kristin Willard]

I grew up in northern New Jersey, which I think is one of the most wonderful places on the planet to grow up, despite what you might hear from New Yorkers. You know, we are the butt of many jokes, but I really think it was an absolutely delightful place to grow up.

[Lauren Bright Pacheco]

Where in northern New Jersey?

[Kristin Willard]

In Morris County. I grew up in Whippany. When I was growing up, I had the luxury to move to Europe a few times with my family because of my father's job. I spent my first and second grade years in England and sixth grade in Paris and in Belgium. And that was, I think, one of the things that got me interested in working globally and in helping people sort of outside my myself and outside of my backyard.

[Lauren Bright Pacheco]

I hear you're a woman of many hobbies.

[Kristin Willard]

I'm a bit of a True Crime.

[Dr. Payel Gupta]

Enthusiastic.

[Kristin Willard]

I think that my friends would probably say that's the understatement of the year, to be honest. It is the rabbit hole I go down when I should be sleeping because I have an 8am meeting.

[Lauren Bright Pacheco]

What draws you to True Crime?

[Kristin Willard]

My formal training is actually in clinical psychology, and I had entered my graduate program wanting to be a forensic psychologist. But I also think it's because of my interest in other humans and understanding how they tick.

[Lauren Bright Pacheco]

So how did you make the leap from forensic psychology to working in Patient advocacy.

[Kristin Willard]

In my 20s, I was working as a research assistant at Georgetown University for three years before I went to graduate school in Florida. And in graduate school, I was actually working in epilepsy research. So health has always been my interest.

[Lauren Bright Pacheco]

Looking back at your childhood, were there any indications of. Of what kind of health issues you would encounter in your 20s?

[Kristin Willard]

No. No precursors. The first symptoms were in my 20s. I can say truthfully that I had no inkling of what was to come.

[Lauren Bright Pacheco]

All right, let's dive into that a little bit. You're at that point living in Arlington.

[Kristin Willard]

That's correct. This was in the early 90s. I was living just outside of D.C. and working my first job ever, which was very exciting in the city. I went to a local laundromat and I was in my 20s, so I was not particular about what kind of products I used or detergents or anything along those lines. In those days, whatever was the least expensive. I washed my clothes at the laundromat, came home, and the next day I woke up with a rash. A bright red, itchy rash in the exact shape of my bra and underwear. I called my mom. Can you tell me what this is? You know, what she said to me was it was too strong for you. So I went into urgent care and they quickly gave me steroids and told me to use antihistamines.

[Lauren Bright Pacheco]

You said that it was in the exact location of your undergarments. But was the skin warm to the touch?

[Kristin Willard]

It does feel warm to the touch. I think the most striking characteristic, though, is the itch. The itch is incessant. It isn't something like a sunburn where you can feel it and you can see it, but that it is, you know, tolerable if you're not moving. It sort of consumes all of you because the itch is so strong.

[Lauren Bright Pacheco]

So since that was your first outbreak or episode, did they look at it and just attribute it directly to the detergent?

[Kristin Willard]

Yes, I think so. Especially because the evidence was so specific, because it was in the shape of my undergarments. They thought they were on the right track. Let's make sure the symptoms go away. And they did. And they go away for quite a long time actually, before they pop up again. I thought I was home free.

Thinking.

[Lauren Bright Pacheco]

That this strange rash was just a one time fluke and allergic reaction. Kristen makes a note to avoid that specific detergent and she goes on with her life. Her career blossoms as she finds her purpose working in patient advocacy alongside the person that would quickly become her best friend. Stephanie, how long have you known Kristin? Tell me when and where you first met.

[Stephanie]

We met at our past job. We both started at this new job about a week apart. And so we've known each other for about 10 years. And, you know, I think sometimes your work friends are some of your closest friends, and I think that's maybe true for us.

[Lauren Bright Pacheco]

So what were your first impressions of Kristin?

[Stephanie]

She is really such a joy to be around. I mean, just as a person, as a coworker, she's fantastic. She is dedicated and she is determined. If you need anything, she's there. I describe her as sunshine. She really is just one of the most beautiful people I've ever met.

[Lauren Bright Pacheco]

So, outside of your work, what are some things that you two have in common?

[Stephanie]

We love animals, we love true crime. We're foodies, we're vegetarians, we joke that we share a brain.

[Lauren Bright Pacheco]

And you found your way to patient advocacy because your background is in healthcare.

[Stephanie]

Yeah, so I have been in healthcare for around 20 ish years. I started out as a nursing student, and then I switched over and became a respiratory therapist. And I've loved it ever since.

[Lauren Bright Pacheco]

Nearly a decade after the laundry detergent incident, Kristen is hit out of nowhere with another mysterious rash. When was the next incident?

[Kristin Willard]

The next incident was in my 30s, and this rash made itself seen everywhere. It was known by anybody who would see me, and the rash would migrate all over my body.

[Lauren Bright Pacheco]

So this time the rash hasn't stuck to one location.

[Kristin Willard]

That's correct. So sometimes it was on my face, then in two hours on both of my legs, the entirety of my legs. Sometimes it's accompanied by swelling that is so significant that it causes pain. It almost makes your hands and your feet feel like sausages. Like you're shoved so tightly into this casing that you might burst. So it was very different from this point on.

[Lauren Bright Pacheco]

This inexplicable rash comes back regularly and it lingers for days or even weeks at a time, its impact unbearable.

[Kristin Willard]

When I have one of these episodes, my skin is covered in inflamed welts, just very red. Your skin looks angry. Very red, sometimes almost purple. And much of the time, the skin is actually raised up. It feels to me as if someone has removed all my skin, truly, I mean, all my skin down to, like, the muscle, and then covered me in a wool blanket, like a mohair blanket. And when you can imagine that, right, it makes more sense as to why you can't cook for yourself. You can't drive yourself. You can't, you know, going to a party would be out of the question because I couldn't even get off the couch. I couldn't even get showered.

[Lauren Bright Pacheco]

Kristen is desperate not to let these debilitating flares derail her entire life. But they continue to pop up unexpectedly in impossible moments. Stephanie recalls the first time she witnessed a sudden outbreak in person.

[Stephanie]

The first time I saw her with some of the inflammation in place. We were actually on a work trip in Chicago, and it was bitterly cold and we had checked into the hotel. And the next morning she knocked on my door, and I opened the door and there she stood with her eyes almost swollen shut. It was just the most painful thing that I had ever seen.

[Lauren Bright Pacheco]

Kristen tries her best to find some sort of pattern that is leading to the outbreaks. What are you told is triggering it?

[Kristin Willard]

I tried to find out, Lauren. I thought, oh, they must be from food. There must be something in my environment. Maybe it's someone's pet with whom I interact, who knows? I saw an allergist and we looked for everything. I had exhaustive allergy testing. I had blood work. I would track the things I ate. I tracked things I was exposed to. I used detergents that were free and clear. I stained, stayed away from perfumes, all of these types of things. There was a time in my 30s where I was convinced that it was old bay seasoning.

[Lauren Bright Pacheco]

Can you just talk to me about what testing you went through and what the results were?

[Kristin Willard]

I had what I consider a very traditional test where they do pinpricks on your skin. So they mapped out my back and did quite an extensive panel. I would guess at least 30, maybe 30 or 40 different tests. And it came back absolutely negative for everything, everything. And I was really shocked. I still thought it was an allergy, but I just thought we hadn't found out what that allergy was yet.

[Lauren Bright Pacheco]

In a desperate attempt to help her friend, Stephanie joins the hunt for clues. Both of you guys are true crime.

[Stephanie]

Yes.

[Lauren Bright Pacheco]

Armchair detectives of sorts. Did you guys apply that skill to trying to figure out what was causing these outbreaks?

[Stephanie]

We absolutely did. I mean, we were trying to apply all of the different learnings through all the years and come up with answers. But none of the things that we would come up with would actually be helpful.

[Lauren Bright Pacheco]

Kristen feels if she can just isolate the trigger, if she can just. Just get to the bottom of what is causing the flare ups, she can defend herself from attack. But try as she might, the rash returns.

[Kristin Willard]

I don't know what this is, what's causing it, but I'm sure I was exposing myself to an allergen. I was sure that was it. And particularly because of what happened in my 20s, that was really obvious as to what had caused it. And I was furious because I'm so methodical that I was like, I have eliminated that detergent and I make sure I don't even touch it when I go to friends houses. So what else is there? Everything becomes a potential demon, right?

[Lauren Bright Pacheco]

When you're desperate for an answer as to what's bringing something on that, it's very difficult to keep your mind from jumping at conclusions as to anything I.

[Kristin Willard]

Think you want so badly to see, figure it out so that you can stop it from happening again in the future.

[Stephanie]

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.

[Lauren Bright Pacheco]

Was it more frustrating for you because of your area of expertise? Did you blame yourself for not being able to figure it out on your own?

[Kristin Willard]

On some levels it's very interesting because I have some expertise in this area, but I think when I became like every other person or patient, your other hats go out the window. At least they did for me at the time. And I think I was so incapacitated by the symptoms that it was more just, you know, fight or flight.

[Dr. Payel Gupta]

So itch is a huge deal, right?

[Lauren Bright Pacheco]

That's Dr. Payel Gupta. Dr. Gupta is a triple board certified allergy and immunology specialist. She is also the co host of the Itch podcast.

[Dr. Payel Gupta]

I actually am the classic allergist. I suffer from a lot of allergies. I have asthma, I have allergies of my eyes and nose, to pollen, to cats, to other animals. And I also have eczema. It's just a complicated symptom. And it's related to nerve fibers in the skin that send a signal to the brain, which can be triggered by many things. And sometimes it can be a vicious cycle where the more you scratch that itch, the worse those nerve fibers get. And so then you get even more itching. It's a vicious cycle for the patients.

[Lauren Bright Pacheco]

Years go by and Kristen is still living with these unexplained flare ups that hit her without warning. Now these periods of whole body rashes are lasting months at a time and Kristen's doctors are still stumped. Here's Stephanie's recollection of that period.

[Stephanie]

There was a long period of time where they were prescribing a kind of regimen of proton pump inhibitors and antihistamines and all sorts of anti inflammatories to see if they could just reduce some of the inflammation.

[Lauren Bright Pacheco]

Was there anything that was giving you relief?

[Kristin Willard]

By my, I would guess my 30s, maybe my 40s, I had introduced famotidine into the equation.

[Lauren Bright Pacheco]

What is that?

[Kristin Willard]

It's more commonly known by brand names like Pepcid. And I had also used soaks that you can use for your skin to calm irritation that you can use in the bath, things like oatmeal baths and there are other soaps that you can buy over the counter to use. And I did find that that would be helpful. Sometimes I would even just be on the couch with a Tupperware of cold water and use a washcloth against my skin. And that felt quite good. And I'm not sure it did anything, but it did feel good in the moment.

[Lauren Bright Pacheco]

What was that time like on a day to day basis? As you're just trying to live your.

[Kristin Willard]

Life, you really do adjust. You are driving your car, you are walking your dog, you are going to birthday parties, but you still have hives, right? So it was almost like if you would get prank calls when you were younger and you didn't know where they were coming from and you were always looking over your shoulder, when is this going to happen again?

[Stephanie]

It was never ending. You know, all day long she would be in such misery. All night long she would be in such misery. So here she is trying to make it through her day and be a professional, be her normal self to everyone on the outside, you know, and not let them know that there's anything going on. That in and of itself is exhausting. She's trying to meet all the demands of her day, having little to no sleep because she's so miserable all night long. There's only so much of that that a person can deal with before you get to the breaking point. It's just more than people are built for. Honestly, it is torture.

[Lauren Bright Pacheco]

What was the lowest point for you?

[Kristin Willard]

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.

And I didn't think I would do it. I just remember thinking to myself that I understood how they could feel. Like there was no future if it didn't stop.

[Lauren Bright Pacheco]

We'll be right back with Symptomatic A Medical Mystery Podcast.

[Novartis Representative]

Picture this. It's 3am you have a busy day ahead of you, but you've been up all night scratching unbearably itchy hives. If this sounds familiar, then you know chronic spontaneous urticaria, also called chronic hives, is Never Just Hives. NeverJustHives.com is a space for those who understand that chronic hives is missed work, canceled plans and isolation. It's here for you because we know how important it is to have the resources you need and that your doctor recognizes your true struggle. It's never just just hives. Make sure your doctor knows that. Learn [e-mail] a message provided by Novartis.

[Lauren Bright Pacheco]

Now back to Symptomatic A Medical Mystery Podcast. Kristen Willard has been living with pain and unpredictable rashes for two decades. At this point, these flares show up on her doorstep with no warning. Staying for months on end, she's tried everything to figure out what triggers their arrival. Allergen panel tests, changes in diets, avoiding fragrance, becoming increasingly selective on what is going in or near her body. But her efforts have no impact. Covered in excruciating welts that itch constantly with no clues or patterns to be found relating to their cause. Now in her 40s, Kristen has lost hope that she will ever find answers and is living in horrendous discomfort, looking down a tunnel with little light at the end.

[Kristin Willard]

I was on the couch and I was so miserable that I remember thinking to myself, I understand why people kill themselves. I understood how they could feel like there was no future if it didn't stop. People will often compare my symptoms to many mosquito bites and I think to myself, no, no, no, no. I have had many, many mosquito bites at one time before. No one ever describes many mosquito bites as feeling like they've been skinned alive. I think it is very hard for people to understand. I think the thought is you'll take an antihistamine and they will go away. And so I think it's the duration, the severity, those things are really hard for anyone who hasn't experienced these to wrap their mind around, and that's not their fault. I would go years without flares. But it is hard to impress upon people just how debilitating it is.

[Lauren Bright Pacheco]

When Kristin opens up about her experience, Stephanie is hit with the weight of her pain.

[Stephanie]

When she would talk about what she was going through.

When she would talk about what she was going through and really letting me know.

About how uncomfortable she was. Not just in the moment within the framework of this is happening and I can't control it and I can't stop it, and if this is the way this is going to be.

I don't know that I can endure this or I want to endure this. And she would just express this exasperation, you know, just truly exasperated. And I think for most people, being able to convey that to your healthcare provider in such a way that they don't see you as being hyperbolic or hysterical or, you know, just attention seeking, there's all these things that you're trying to balance when you have these conversations with people to try to get them to take you seriously. I think those were the moments that maybe translated or were sensed by her healthcare team that this cannot go on. I cannot continue like this. I need help. I need something more than what I'm getting. This can't be all. The thought of this world, not having her in it because of something like that is. That's just unbearable.

[Lauren Bright Pacheco]

Doctor Gupta is all too familiar with the emotional and social impact of unexplained chronic illness.

[Dr. Payel Gupta]

Oftentimes. I've also heard that relationships are altered by these symptoms. If you haven't gone through it, you don't really understand the intense nature of the symptoms that your loved one may be experiencing. They'll be in this kind of cycle of trying to find relief and really suffering.

[Lauren Bright Pacheco]

At this point, Kristen is living with outbreaks that last as long as six months. Her body covered in rashes for longer periods at a time, and the relief between flares is dwindling. Things are getting worse and worse. She decides again to seek help from a professional, but this time she finds a specialist who is an expert in the field of allergy immunology, and she is out, absolutely determined to get an answer.

[Kristin Willard]

I had had an episode for it would have been longer than six weeks at this point, and I was having trouble getting relief. It's hard to say it out loud. Nothing that we would have done in the past was working. The worst part for me personally are the first few weeks. That's where I find it hard to sit, to have a conversation like this, where I don't want to shower because of how bad it feels or that my sleep is disturbed. You are managing it just as best you can. It will come and go, and you just are waiting for it to get bad again.

I would never go more than 24 hours that I can recall during that time without having hives. I find it really traumatizing. So I went to a new allergist, immunologist, and I felt this need to prove to her how miserable I was because it waxes and wanes. Sometimes you'll show up to the doctor and your hives won't be bad. So I was prepared with pictures and Descriptors. You know, I was ready to go. And she didn't need any of that. She believed me. She knew what it was.

[Lauren Bright Pacheco]

After 20 years of desperately seeking answers, you'd found a doctor who knew knew what she was looking at. What did she say?

[Kristin Willard]

She said, I have chronic spontaneous urticaria.

[Lauren Bright Pacheco]

Also known as CSU. Dr. Gupta, expert in the field of allergy and immunology, explains, chronic spontaneous urticaria.

[Dr. Payel Gupta]

Is a specific type of condition where you've had hives for at least six weeks or longer, and they come and go with without any rhyme or reason. You can get them in the morning, when you wake up, in the middle of the night, during the day, any time of the day. Hives can also be called urticaria. And hives are caused by a chemical called histamine that's released in our body. And when histamine is released, it can cause hives. And histamine can be released because of an allergic reaction, but it can also be released outside of an allergic reaction. That's where it gets really confusing for people with chronic spontaneous urticaria, because those aren't hives related to an allergy.

[Lauren Bright Pacheco]

Do we know the root cause why some individuals have CSU and others don't?

[Dr. Payel Gupta]

We're starting to see that it may be something called an autoimmune or an auto allergic condition within their body. And so what that means is that your body may be reacting to chemicals that are in your body normally and that may be causing mast cells to secrete the histamines.

[Lauren Bright Pacheco]

With csu, are there triggers in terms of the flare up?

[Dr. Payel Gupta]

Trigger can sometimes be a confusing word, because sometimes when people think of triggers, they think that's the cause. So it's not the cause of those mast cells, because being activated, your body would release those chemicals with or without that trigger, but that release may be enhanced if you're also exposed to that trigger. Triggers may be things like stress, maybe things like hot or cold weather, maybe things like certain foods. But even if we put somebody who had chronic spontaneous urticaria in a bubble, they would still have hives because the body is doing something inside of itself that's causing the mast cells to release those chemicals.

[Kristin Willard]

And it was so freeing for me. It really was. It was something that had nothing to do with any allergy at all. And I also found out at that time that we would probably never find out what caused it. And can I tell you what a relief that was to me? I know that sounds counterintuitive maybe, but I could stop trying to Figure out what it was that this was. It was just something my body was doing. Being overactive in its defense of itself.

[Lauren Bright Pacheco]

Finding a diagnosis for patients with this debilitating condition after years of searching for answers is something Dr. Gupta doesn't take for granted.

[Dr. Payel Gupta]

You know, those are the good days. Those are the great visits. Those are the visits that we wish we could just have on repeat because those are the moments that every doctor wants with csu because the quality of life burden is so high, when a patient finally gets relief, it is very rewarding and everyone feels so good.

[Lauren Bright Pacheco]

Kristen's visit with her own doctor was this way.

[Kristin Willard]

I think that doctor really changed the way that I view this condition entirely. It was probably less than 20 minutes, that first conversation I had with her. And she changed my life. She really did.

[Stephanie]

When she said, this has a name and this is what we're going to do about it and we have a plan, there was so much relief, so much relief and just having the name because now you know what you're dealing with and you have a strategy, something that you can do to improve your situation, to improve the symptoms, to improve your day to day. And I think just the joy, the relief that I think both of us felt in that moment, that was pretty profound.

[Lauren Bright Pacheco]

Were you familiar with csu?

[Stephanie]

Most of the patients that I would work with have other inflammatory problems, processes going on, whether it be asthma or COPD or something like that. So they would always be coupled with other sorts of flare ups. But, yeah, I had been familiar with CSU for years.

[Lauren Bright Pacheco]

Wow. So it must have been in that moment. It must have been as if you were standing so close to the puzzle. Yes. That you couldn't see it.

[Stephanie]

That is exactly how it was. It's like sometimes you feel like you're working the puzzle, but you don't have the picture for the box. You're just trying to frantically put pieces together. And that's a lot of what this felt like.

[Lauren Bright Pacheco]

After years on her diagnostic odyssey, Krista not only had found a name for her condition, but there was also a clear path forward. What did your doctor tell you about possible treatments?

[Kristin Willard]

She said the logical next step is to try a biologic, if you're willing. And she told me all about it, and I would have done it in that very moment if I could have.

[Lauren Bright Pacheco]

For those who are not familiar, what is a biologic?

[Dr. Payel Gupta]

Most medications are made from chemicals. Biologic medications are made from living organisms. It is a medication that targets a specific part of the the body internally and it helps shut things off or Turn things on.

[Lauren Bright Pacheco]

So it almost seems like it is as close to a personalized, almost designer approach to a particular condition.

[Kristin Willard]

I think it's 100% as close as it can get in the situation to personalized medicine. I felt that my hives were getting the attention sort of they deserved.

[Dr. Payel Gupta]

When we first started seeing patients with csu, we really only had antihistamines. And it was really frustrating for us as doctors and for patients because we weren't getting to that point where people were getting relief. Now we actually have three other medications that are approved for chronic spontaneous urticaria. And if one doesn't work, then we can reach for another. It was a game changer.

[Lauren Bright Pacheco]

Did you have any reservations at all about trying the biologic?

[Kristin Willard]

I definitely was nervous because this was so new. I think anytime that they say, you know, we'll keep you in the office for a set amount of time after to monitor for anaphylaxis, that's nerve wracking, right? Even though, you know how well this works and the safety profiles of certain drugs, you know, I think that would be nerve wracking for anyone. But I was just filled with such hope. I think that something might change for me.

[Stephanie]

I remember that she was getting ready to go for her first appointment for her biologic treatment, and she was pretty nervous about it. For many years, I had asthmatic patients who would come into the hospital and we would administer the biologic in the emergency room and have them sit and wait with us for 45 minutes or an hour. You just make sure they didn't have any adverse reactions. And so I was very familiar with these biologics. And I said, let me tell you what it's going to be like. And so I was able to share with her, you know, this is what they'll do. This is how the treatment will be. And I think we talked maybe that whole 45 minutes that she was in the waiting room. Finally the time was up and they let her go. And she said, oh, that wasn't bad at all.

[Kristin Willard]

I had really hoped that the results would be, you know, within the first month, they would be much better, and then I would expect not to see them again after that.

[Lauren Bright Pacheco]

But the results were not immediate. In fact, when months had passed and Kristen was still experiencing symptoms, she started to believe that maybe this treatment was not going to work.

[Stephanie]

She was a little disappointed because it didn't seem to be working and really questioning whether or not it was something that she should even continue because she wasn't getting any benefit from it. And I Remember having the conversations with her of just stick it out. These things are not immediate. It took you a long time to get to this point. We need to give this biologic a chance. We need to give this medication a chance to get in there and undo all of the things that have been done.

[Kristin Willard]

I was losing hope. And I talked to a colleague who was a pharmacist and just said, can you help me to understand, you know, is it going to be this way forever? And he was talking with colleagues who said to him, you know, make sure she waits to six months. Let's just see what happens when she gets to six months. And I thought, okay, I can do that. Let's see what happens when we get to six months.

[Lauren Bright Pacheco]

And then early in 20, 19, 20 years after the first rash and six months after the biologic was administered, what happens?

[Kristin Willard]

In my mind, it is almost as if a switch flipped at six months, almost exactly as they had said to me, and my hives were gone. Absolutely gone.

[Lauren Bright Pacheco]

Even now, looking back on this, I can. I can feel your joy.

[Kristin Willard]

I'm grinning like a goofball.

[Lauren Bright Pacheco]

How many years has it been?

[Kristin Willard]

I think it has been. I think it has been seven years.

[Lauren Bright Pacheco]

Wow.

[Kristin Willard]

Can you believe that I actually didn't start to say that I was in remission until this year? Believe it or not, I still keep a drawer full of antihistamines just in case. And every once in a while, I will have a hive, and I do not panic.

[Lauren Bright Pacheco]

How have you seen life change for Kristen since she has gotten relief through.

[Stephanie]

Effective treatment, she is finally comfortable in her own skin.

She's not constantly thinking about, oh, what if I have this flare up? Or I'm in the middle of this flare up? How can I possibly do all the things that I need to do? She can really just have a normal existence now, a normal life, without the worry of always having that hanging over her head.

[Kristin Willard]

One of the best things in life is being in a hot shower or being in a hot tub, a warm pool or the warm ocean. And that was absolutely intolerable. What a gift it is that I can have water touch my skin without misery.

[Lauren Bright Pacheco]

Wow.

That just made me emotional. You know, it's. If you. A door opened and you were allowed to step back into living life fully.

[Kristin Willard]

Yes, that's exactly right. That's exactly what it feels like.

[Lauren Bright Pacheco]

This is the perfect place to pivot into your advocacy work. Why is advocacy such a big part of your life today?

[Kristin Willard]

I started in advocacy work because my father died of copd.

[Lauren Bright Pacheco]

COPD stands for chronic AC Obstructive Pulmonary Disease. It refers to a group of lung diseases that cause damage to the lungs over time.

[Kristin Willard]

He was 65 years old. He had only been retired two years and his mother died at 57 of COPD as well. And I didn't even know that patient advocacy organizations existed until I found the COPD Foundation. And once there, I realized that there were all of these caring, brave, right motivated, passionate individuals working to improve the lives of people impacted by chronic disease every day.

[Lauren Bright Pacheco]

Kristin left the COPD foundation in 2023 to take a job as the vice president of education for the Global Allergy and Airways patient Platform. She is also the executive director of wecu, a nonprofit dedicated to empowering and improving the lives of those affected by chronic urticaria.

[Kristin Willard]

It's amazing the world that opens up to you when you start listening to patients and their families, whether they live next door to you or whether they live on the other side of the globe. It is amazing what we can do for each other, how we can empower each other, educate each other. It's amazing how we can help to push others to better advocate for better care for themselves or for physicians and other healthcare professionals to listen to them in a way they haven't before, to work with them in a way that they haven't before, or to even speak to lawmakers that they thought they would never meet in their lives. The power of patient advocacy is, I feel, limitless. And so I consider it an honor for us to be able to do this every day. I'm very lucky that this is what my journey has been.

[Stephanie]

We work so closely with patients who are living with chronic illnesses. It changed our perspectives, hers in particular, because she can say, I understand exactly what you're talking about. I know what it's like to live with a chronic illness, but you don't have to be a victim of it. You can find your power and you can change this outcome. And I think that is really powerful for her.

[Dr. Payel Gupta]

I think the most important thing that a provider needs to do is acknowledge those feelings, right? And acknowledge that the condition that they have, that they are dealing with a condition that's difficult, right? And so again, sometimes even patients, because it's not a life threatening condition, they get kind of confused and they feel like they. Am I overreacting? No, you're not overreacting. This is a big deal. You're not able to sleep, you're not able to function. You are feeling uncomfortable in your body and you're also feeling self conscious. We are here in partnership and we're gonna figure out which medication is gonna work.

[Lauren Bright Pacheco]

And is there a new type of medication on the block when it comes.

[Dr. Payel Gupta]

To treating csu, Just recently we have another new option which, which is called a BTK inhibitor. And this is what we call a small molecule medication. And one of the things that we have seen with the BTK inhibitor is that it may work more quickly than biologics. All of these medications target different parts of the immune system and block that histamine ultimately from getting released. For me, more is better. I can't wait for more research to be done in this condition and all conditions so that we can really have options when one medication may not work for a patient. Because at the end of the day, every human body is different. And some people may respond to one medication and some people may respond to another medication. We are in this field to help people feel better, and that's our ultimate goal. At altitude times.

[Lauren Bright Pacheco]

Kristin, what do you hope that people take away from your story?

[Kristin Willard]

You didn't even know you said it, but hope is what I hope they take away. I think that when we are in our darkest moments with a chronic condition, we often don't think that there's anyone out there working for us. We don't think that there are people who understand us or other people who are going through what we've gone through, or healthcare professionals who can help us.

[Stephanie]

Even if it feels like the condition is unbeatable, even if you feel like in the moment, oh, this is not getting any better, I'm tired. Even when it feels insurmountable, know that it isn't. Know that there are people out there all day, every day who have dedicated their lives to finding answers for you and people like you. They're doing the research, they're doing the clinical trials. They're out there trying to find answers to support you. So keep looking. Keep searching. Find the right healthcare team that will not take no for an answer and will keep looking to find the right answers for you.

[Kristin Willard]

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. I think that communication, that community, that support, that peer to peer advocacy is irreplaceable. You do not have to suffer in silence alone or think this is something that you just have to adapt to for the rest of your life because your life does not have to be like this. There is hope. There is hope. I'm Kristen 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.

[Lauren Bright Pacheco]

You can learn more about WECU@ chronic-urticaria.org and you can find the Global Allergy and Airways patient [e-mail].

Coming up on next week's episode of Symptomatic. Michelle Shapiro had built a career helping others get healthy when she was hit with a debilitating health crisis.

[Michelle Shapiro]

If I had to go to the bathroom, I had to literally lift myself up with my arms onto my computer chair, put myself on the floor, crawl, because if I put my feet on the ground, my heart rate fluctuations were so severe that I would then be in an episode for days.

[Lauren Bright Pacheco]

Doctors were unable to identify the cause of her symptoms, no matter how hard Michelle pushed for answers. So unwell that she could barely function, Michelle made it her mission to get to the bottom of what was going on, only to find that the condition she was experiencing is still being understood by the medical community.

As always, we would love to hear from you. Send us your thoughts on this episode or share a medical mystery of your own@ symptomaticiheartmedia.com and please rate and review Symptomatic wherever you get your podcasts. We'll see you next time. Until then, be well. Symptomatic A Medical Mystery Podcast is a production of iHeartMedia's Ruby Studio. Our show is hosted by me, Lauren Bright Pacheco. Our executive producer are James Foster, Matt Romano and myself. Our supervising producers are Ryan Ovadia, Haley Aliyah Erickson and Daniel Ainsworth. This episode was written by Haley Alia Erickson and edited by Samuel Richards.

[Novartis Representative]

Picture this it's 3am you have a busy day ahead of you, but you've been up all night scratching unbearably itchy hives. If this sounds familiar, then you know chronic spontaneous urticaria, also called chronic hives, is Never Just Hives. NeverJustHives.com is a space for those who understand that chronic hives is missed work, canceled plans and isolation. It's here for you because we know how important it is to have the resources you need and that your doctor recognizes your true struggle. It's never just hives. Make sure your doctor knows that. Learn [e-mail] A message provided by Novartis.

[Stephanie]

This is an I Heart Podcast.

[Kristin Willard]

Guaranteed human.