Speaker 1: Rube. It feels to me as if someone has removed
Speaker 1: all my skin down to like the muscle and then
Speaker 1: covered me in a bull blanket, like a mowhare blanket.
Speaker 2: The thought of this world not having her in it,
Speaker 2: that's just unbearable.
Speaker 3: There'll be in this kind of cycle of trying to
Speaker 3: find relief and really suffering and ending up in the
Speaker 3: emergency room or urgent care.
Speaker 1: And you're always looking over your shoulder, when is this
Speaker 1: going to happen again?
Speaker 4: How terrifying would it be to fight an unknown enemy,
Speaker 4: one you didn't recognize and didn't see coming. What if
Speaker 4: that enemy was coming from within a disease that even
Speaker 4: doctors couldn't identify. Nearly half of Americans suffer from some
Speaker 4: chronic and many struggle for an accurate diagnosis. These are
Speaker 4: their stories. I'm Lauren brag Pacheco, and this is symptomatic.
Speaker 5: My name is Kristin Willard.
Speaker 1: I am the executive director at We See You, which
Speaker 1: is a US nonprofit, and I also oversee education for
Speaker 1: an organization called GAP, the Global Allergy and Airways Patient Platform.
Speaker 4: An excellent listener, full of curiosity about others. Kristin is
Speaker 4: one of those people who immediately feels like an old friend.
Speaker 4: She loves dogs, has a thirst for knowledge, and is
Speaker 4: driven by a desire to help others. Kristin where are
Speaker 4: you originally from?
Speaker 1: I grew up in northern New Jersey, which I think
Speaker 1: is one of the most wonderful places on the planet
Speaker 1: to grow up.
Speaker 5: Despite what you might hear from me.
Speaker 1: You know, we had the butt of many jokes, but
Speaker 1: I really think it was an absolutely delightful place to
Speaker 1: grow up. Where in Northern New Jersey in Morris County,
Speaker 1: I grew up in Whippany. When I was growing up,
Speaker 1: I had the luxury to move to Europe a few
Speaker 1: times with my family because of my father's job. I
Speaker 1: spent my first and second grade years in England and
Speaker 1: sixth grade in Paris and in Belgium, and that was
Speaker 1: I think one of the things that got me interested
Speaker 1: in working globally and in helping people sort of outside myself,
Speaker 1: an outside of my backyard.
Speaker 4: I hear you're a woman of many hobbies. I'm a
Speaker 4: bit of a true crime enthusiast. I think that my
Speaker 4: friends would probably say that's the understatement of the year.
Speaker 4: To be honest, it is the rabbit hole I go
Speaker 4: down when I should be sleeping because I have an
Speaker 4: eight am meeting. What draws you to true crime?
Speaker 1: My formal training is actually in clinical psychology, and I
Speaker 1: had entered my graduate program wanting to be a forensic psychologist.
Speaker 1: But I also think it's because of my interest in
Speaker 1: other humans and understanding how they tick.
Speaker 4: So how did you make the leap from forensic psychology
Speaker 4: to working in patient advocacy?
Speaker 5: In my twenties.
Speaker 1: I was working as a research assistant at Georgetown University
Speaker 1: for three years before I went to graduate school in Florida,
Speaker 1: and in graduate school, I was actually working in epilepsy research.
Speaker 1: So health has always been my interest.
Speaker 4: Looking back at your childhood, were there any indications of
Speaker 4: what kind of health issues you would encounter in your twenties?
Speaker 1: No, no precursors. The first symptoms were in my twenties.
Speaker 1: I can say truthfully that I had no inkling of
Speaker 1: what was to come.
Speaker 4: All right, let's dive into that a little bit. You're
Speaker 4: at that point living in Arlington.
Speaker 5: That's correct. This is in the early nineties.
Speaker 1: I was living just outside of DC and working my
Speaker 1: first job ever, which was very exciting.
Speaker 5: In the city.
Speaker 1: I went to a local laundromat, and I was in
Speaker 1: my twenties, so I was not particular about what kind
Speaker 1: of products I used, or detergents or anything along all
Speaker 1: those lines. In those days, whatever was the least expensive.
Speaker 1: I washed my clothes.
Speaker 5: At the laundromat, came home, and the next day.
Speaker 1: I woke up with a rash, a bright red, itchy
Speaker 1: rash in the exact shape of my bra and underwear.
Speaker 5: I called my mom, can you tell me what this is?
Speaker 5: You know? What she'd said to me was it was easy,
Speaker 5: was too strong for you?
Speaker 1: So I went into urgent care and they quickly gave
Speaker 1: me steroids and told me to use anahistamines.
Speaker 4: You said that it was in the exact location of
Speaker 4: your undergarments, but was the skin warm to the touch?
Speaker 5: It does feel warm to the touch.
Speaker 1: I think the most striking characteristic, though, is the itch.
Speaker 1: The itch is incessant. It isn't something like a sunburn
Speaker 1: where you can feel it and you can see it,
Speaker 1: but that it is tolerable if you're not moving. It
Speaker 1: sort of consumes all of you because the itch is
Speaker 1: so strong.
Speaker 4: So since that was your first outbreak or episode, did
Speaker 4: they look at it and just to attribute it directly
Speaker 4: to the detergent.
Speaker 1: Yes, I think so, especially because the evidence was so specific,
Speaker 1: because it was in the shape of my undergarments. They
Speaker 1: thought they were on the right track. Let's make sure
Speaker 1: the symptoms go away. And they did, and they go
Speaker 1: away for quite a long time actually, before they pop
Speaker 1: up again.
Speaker 5: I thought I was home free.
Speaker 4: Thinking that this strange rash was just a one time
Speaker 4: fluke an allergic reaction. Kristin makes a note to avoid
Speaker 4: that specific detergent, and she goes on with her life.
Speaker 4: Her career blossoms as she finds her purpose working in
Speaker 4: patient advocacy alongside the person that would quickly become her
Speaker 4: best friend, Stephanie. How long have you known Kristin? Tell
Speaker 4: me when and where you first met.
Speaker 2: We met at our past job. We both started at
Speaker 2: this new job about a week apart, and so we've
Speaker 2: known each other for about ten years. And you know,
Speaker 2: I think sometimes your work friends are some of your
Speaker 2: closest friends, and I think that's maybe true for us.
Speaker 4: So what were your first impressions of Kristin?
Speaker 2: She is really such a joy to be around. I
Speaker 2: mean just as a person. As a coworker, she's fantastic.
Speaker 2: She is dedicated and she is determined. If you need anything,
Speaker 2: she there. I describe her as sunshine. She really is
Speaker 2: just one of the most beautiful people I've ever met.
Speaker 4: So, outside of your work, what are some things that
Speaker 4: you too have in common?
Speaker 2: We love animals, we love true crime, we're foodies, we're vegetarians.
Speaker 2: We joke that we share a brain.
Speaker 4: And you found your way to patient advocacy because your
Speaker 4: background is in healthcare.
Speaker 2: Yeah, so I have been in healthcare for around twenty
Speaker 2: ish years. I started out as a nursing student, and
Speaker 2: then I switched over and became a respiratory therapist and
Speaker 2: I've loved it ever since.
Speaker 4: Nearly a decade after the laundry detergent incident, Kristin has
Speaker 4: hit out of nowhere with another mysterious rash. When was
Speaker 4: the next incident?
Speaker 1: The next instance was in my thirties, and this rash
Speaker 1: made itself seen everywhere. It was known by anybody who
Speaker 1: would see me, and the rash would migrate all over
Speaker 1: my body.
Speaker 4: So this time the rash hasn't stuck to one location.
Speaker 5: That's correct.
Speaker 1: So sometimes it was on my face, then in two
Speaker 1: hours on both of my legs.
Speaker 5: The entirety of my legs.
Speaker 1: Sometimes it's accompanied by swelling that is so significant that
Speaker 1: it causes pain. It almost makes your hands and your
Speaker 1: feet feel like sausages, like you're shoved so tightly into
Speaker 1: this casing that you might burst.
Speaker 5: So it was very different.
Speaker 4: From this point on. This inexplicable rash comes back regularly,
Speaker 4: and it lingers for days or even weeks at a time.
Speaker 4: It's impact unbearable.
Speaker 1: When I have one of these episodes, my skin is
Speaker 1: covered in inflamed, well just very red. Your skin looks angry,
Speaker 1: very red, sometimes almost purple, and much of the time
Speaker 1: the skin is actually raised up. It feels to me
Speaker 1: as if someone has removed all my skin truly, I
Speaker 1: mean all my skin down to like the muscle, and
Speaker 1: then covered me in a wool blanket, like a mowhair blanket.
Speaker 1: And when you can imagine that, right, it makes more
Speaker 1: sense as to why you can't cook for yourself, you
Speaker 1: can't drive yourself, you can't you know, going to a
Speaker 1: party would be out of the question because I couldn't
Speaker 1: even get off the couch. I couldn't even get showered.
Speaker 4: Kristin is desperate not to let these debilitating flares derail
Speaker 4: her entire life, but they continue to pop up unexpectedly
Speaker 4: in impossible moments. Stephanie recalls the first time she witnessed
Speaker 4: to set an outbreak in person.
Speaker 2: The first time I saw her with some of the
Speaker 2: inflammation in place. We were actually on a work trip
Speaker 2: in Chicago, and it was bitterly cold, and we had
Speaker 2: checked into the hotel. And the next morning she knocked
Speaker 2: on my door and I opened the door, and there
Speaker 2: she stood with her eyes almost swollen shut. It was
Speaker 2: just the most painful thing that I had ever seen.
Speaker 4: Kristen Treizer. Best to find some sort of pattern that
Speaker 4: is leading to the outbreaks. What are you told is
Speaker 4: triggering it?
Speaker 1: I tried to find out, Lauren. I thought, oh, they
Speaker 1: must be from food. There must be something in my environment.
Speaker 1: Maybe it's someone's pet with whom I interact.
Speaker 5: Who knows.
Speaker 1: I saw an allergist and we looked for everything. I
Speaker 1: had exhaust of allergy testing, I had blood work. I
Speaker 1: would track the things I ate. I tracked things I
Speaker 1: was exposed to. I used detergents that were free and clear.
Speaker 1: I stayed away from perfumes, all of these types of things.
Speaker 1: There was a time in my thirties where I was
Speaker 1: convinced that it was old Bay seasoning.
Speaker 4: Can you just talk to me about what testing you
Speaker 4: went through and what the results were.
Speaker 1: I had what I consider a very traditional test where
Speaker 1: they do pinpricks on your skin, so they mapped out
Speaker 1: my back and did quite an extensive panel I would
Speaker 1: guess at least thirty, maybe thirty or forty different tests,
Speaker 1: and it came back absolutely negative for everything, everything.
Speaker 5: And I was really shocked.
Speaker 1: I still thought it was an allergy, but I just
Speaker 1: thought we hadn't found out what that allergy was yet.
Speaker 4: In a desperate attempt to help her friend Stephanie joins
Speaker 4: the hunt for clues. Both of you guys are true crime, Yes,
Speaker 4: armchair detectives of sorts. Did you guys apply that skill
Speaker 4: to try to figure out what was causing these outbreaks?
Speaker 2: We absolutely did. I mean we were trying to apply
Speaker 2: all of the different learnings through all the years and
Speaker 2: come up with answers, but none of the things that
Speaker 2: we would come up with would actually be helpful.
Speaker 4: Kristen feels if she can just isolate the trigger, if
Speaker 4: she can just get to the bottom of what is
Speaker 4: causing the flare ups, she can defend herself from attack,
Speaker 4: but try as she might, the rash returns.
Speaker 1: I don't know what this is, what's causing it, but
Speaker 1: I'm sure I was exposing myself to an allergen. I
Speaker 1: was sure that was it, and particularly because of what
Speaker 1: happened in my twenties, that was really obvious as to
Speaker 1: what had caused it.
Speaker 5: And I was furious.
Speaker 1: Because I'm so methodical that I was, like, I have
Speaker 1: eliminated that detergent and I make sure I don't even
Speaker 1: touch it when I go to friends' houses. So how
Speaker 1: what else is there? Like everything becomes a potential demon right.
Speaker 4: When you're desperate for an answer her as to what's
Speaker 4: bringing something on that it's very difficult to keep your
Speaker 4: mind from jumping at conclusions as to anything.
Speaker 1: And I think you want so badly to figure it
Speaker 1: out so that you can stop it from happening again
Speaker 1: in the future.
Speaker 2: All you want to do is find the thing, find
Speaker 2: the magic wand that's going to take all of this away,
Speaker 2: And we just couldn't find it.
Speaker 4: Was it more frustrating for you because of your area
Speaker 4: of expertise. Did you blame yourself for not being able
Speaker 4: to figure it out on your own? On some levels, It's.
Speaker 1: Very interesting because I have some expertise in this area,
Speaker 1: but I think when I became like every other person
Speaker 1: or patient, your other hats go out the window. At
Speaker 1: least they did for me at the time, and I
Speaker 1: think I was so incapacitated by the symptoms that it
Speaker 1: was more just you know, fight or flight.
Speaker 3: So itch is a huge deal, right.
Speaker 4: That's doctor pil Gupta. Doctor Gupta is a Triple Board
Speaker 4: certified allergy and immunology specialist. She is also the co
Speaker 4: host of the Itch Podcast.
Speaker 3: I actually am the classic allergist. I suffer from a
Speaker 3: lot of allergies. I have asthma, I have allergies of
Speaker 3: my eyes and nose to pollen, to cats, to other animals,
Speaker 3: and I also have ezema. It is a complicated symptom
Speaker 3: and it's related to nerve fibers in the skin that
Speaker 3: send a signal to the brain, which can be triggered
Speaker 3: by many things. And sometimes it can be a vicious
Speaker 3: cycle where the more you scratch that itch, the worse
Speaker 3: those nerve fibers get, and so then you get even
Speaker 3: more itching. It's a vicious cycle for the patients.
Speaker 4: Years go by, and Kristin is still living with these
Speaker 4: unexplained flare ups that hit her without warning. Now, these
Speaker 4: periods of whole body rashes are lasting months at a time,
Speaker 4: and Kristen's doctors are still stumped. Here's Stephanie's recollection of
Speaker 4: that period.
Speaker 2: There was a long period of time where they were
Speaker 2: prescribing a kind of regiment of proton pump inhibitors, anahistamines,
Speaker 2: and all sorts of anti inflammatories to see if they
Speaker 2: could just reduce some of the inflammation.
Speaker 4: Was there anything that was giving you relief?
Speaker 1: By I would guess my thirties, maybe my forties, I
Speaker 1: had introduced fomoddine into the equation.
Speaker 4: What is that it's.
Speaker 1: More commonly known when by brand names like pepsid. And
Speaker 1: I had also used soaks that you can use for
Speaker 1: your skin to calm irritation, that you can use in
Speaker 1: the bath, things like oatmeal baths, and there are other
Speaker 1: soaks that you can buy over the counter to use.
Speaker 1: And I did find that that would be helpful. Sometimes
Speaker 1: I would even just be on the couch with a
Speaker 1: tupperware of cold water and use a washcloth against my skin,
Speaker 1: and that felt quite good.
Speaker 5: And I'm not sure it did anything, but it did
Speaker 5: feel good. In the moment.
Speaker 4: What was that time like on a day to day basis,
Speaker 4: as you're just trying to live your life.
Speaker 5: You really do adjust.
Speaker 1: You are driving your car, you are walking your dog,
Speaker 1: you are going to birthday parties, but you still have hives. Right,
Speaker 1: So it was almost like if you would get prank
Speaker 1: calls when you were younger, and you didn't know where
Speaker 1: they were coming from, and you were always looking over.
Speaker 5: Your shoulder, When is this going to happen again?
Speaker 2: It was never ending, you know, all day long. She
Speaker 2: would be in such misery, all night long, she would
Speaker 2: be in such misery. So here she is trying to
Speaker 2: make it through her day and be a professional, be
Speaker 2: her normal self to everyone on the outside, you know,
Speaker 2: and not let them know that there's anything going going on.
Speaker 2: That in and of itself is exhausting. She's trying to
Speaker 2: meet all the demands of her day, having little to
Speaker 2: no sleep because she's so miserable all night long. There's
Speaker 2: only so much of that that a person can deal
Speaker 2: with before you get to the breaking point. It's just
Speaker 2: more than people are built for. Honestly, it is torture.
Speaker 1: What was the lowest point for you? I can remember
Speaker 1: it very vividly. This was in my forties and I
Speaker 1: was on the couch, and I was so miserable that
Speaker 1: I remember thinking to myself, I understand why people kill themselves,
Speaker 1: and I didn't think I would do it. I just
Speaker 1: remember thinking to myself that I understood how they could
Speaker 1: feel like there was no future if it didn't stop.
Speaker 4: We'll be right back with Symptomatic, a medical mystery podcast.
Speaker 4: Now back to Some a medical mystery podcast. Kristin Willard
Speaker 4: has been living with pain and unpredictable rashes for two decades.
Speaker 4: At this point, these flares show up on her doorstep
Speaker 4: with no warning, staying for months on end. She's tried
Speaker 4: everything to figure out what triggers their arrival, allergen panel tests,
Speaker 4: changes in diets, avoiding fragrance, becoming increasingly selective on what
Speaker 4: is going in or near her body, but her efforts
Speaker 4: have no impact, covered in excruciating welts that itch constantly,
Speaker 4: with no clues or patterns to be found relating to
Speaker 4: their cause. Now in her forties, Kristin has lost hope
Speaker 4: that she will ever find answers and is living in
Speaker 4: her horrendous discomfort, looking down a tunnel with little light
Speaker 4: at the end.
Speaker 1: I was on the couch and I was so miserable
Speaker 1: that I remember thinking to myself, I undersunderstand why people
Speaker 1: kill themselves. I understood how they could feel like there
Speaker 1: was no future if it didn't stop. People will often
Speaker 1: compare my symptoms to many mosquito bites, and I think
Speaker 1: to myself, no, no, no, no, I have had many
Speaker 1: many mosquito bites at one time before. No one ever
Speaker 1: describes many mosquito bites as feeling like they've been skinned alive.
Speaker 1: I think it is very hard for people to understand.
Speaker 1: I think the thought is real. Take an antihistamine and
Speaker 1: they will go away, and so I think it's the duration,
Speaker 1: the severity. Those things are really hard for anyone who
Speaker 1: hasn't experienced these to wrap their mind around. And that's
Speaker 1: not their fault. I would go years without flares. But
Speaker 1: it is hard to impress upon people just how debilitating
Speaker 1: it is.
Speaker 4: When Kristen opens up about her experience, Stephanie is hit
Speaker 4: with the wait of her pain.
Speaker 2: When she would talk about what she was going through,
Speaker 2: When she would talk about what she was going through
Speaker 2: and really letting me know about how uncomfortable she was,
Speaker 2: not just in the moment within the framework of this
Speaker 2: is happening and I can't control it, and I can't
Speaker 2: stop it, and if this is the way this is
Speaker 2: going to be, I don't know that I can endure
Speaker 2: this or I want to endure this. And she would
Speaker 2: just express this exasperation, you know, just truly exasperated, and
Speaker 2: I think for most people being able to convey that
Speaker 2: to your healthcare provider in such a way that they
Speaker 2: don't see you as being hyperbolic or hysterical or attention seeking.
Speaker 2: There's all these things that you're trying to balance when
Speaker 2: you had these conversations with people to try to get
Speaker 2: them to take you seriously. I think those were the
Speaker 2: moments that maybe translated or were sensed by her healthcare
Speaker 2: team that this cannot go on. I cannot continue like this.
Speaker 2: I need help. I need something more than what I'm getting.
Speaker 2: This can't be all. The thought of this world not
Speaker 2: having her in it because of something like that is
Speaker 2: that's just unbearable.
Speaker 4: Doctor Gupta is all too familiar with the emotional and
Speaker 4: social impact of unexplained chronic illness.
Speaker 3: Oftentimes, I've also heard that relationships are altered by these symptoms.
Speaker 3: If you haven't gone through it, you don't really understand
Speaker 3: hence nature of the symptoms that you're loved on maybe experiencing.
Speaker 3: They'll be in this kind of cycle of trying to
Speaker 3: find relief and really suffering.
Speaker 4: At this point, Kristin is living with outbreaks that last
Speaker 4: as long as six months, her body covered in rashes
Speaker 4: for longer periods at a time, and the relief between
Speaker 4: flares is dwindling. Things are getting worse and worse. She
Speaker 4: decides again to seek help from a professional, but this
Speaker 4: time she finds a specialist who is an expert in
Speaker 4: the field of allergy immunology, and she is absolutely determined
Speaker 4: to get an answer.
Speaker 1: I had had an episode for it would have been
Speaker 1: longer than six weeks at this point, and I was
Speaker 1: having trouble getting relief. It's hard to say it out loud.
Speaker 1: Nothing that we would have done in the past was working.
Speaker 1: The worst part for me personally, or the first few weeks,
Speaker 1: that's where I find it hard to sit, to have
Speaker 1: a conversation like this, where I don't want to shower
Speaker 1: because of how bad it feels that my sleep is disturbed.
Speaker 1: You are managing it just as best you can. It
Speaker 1: will come and go. And you just are waiting for
Speaker 1: it to get bad again. I would never go more
Speaker 1: than twenty four hours that I can recall during that
Speaker 1: time without having pithes. I find it really traumatizing. So
Speaker 1: I went to a new allargist immunologist, and I felt
Speaker 1: this need to prove to her how miserable I was.
Speaker 1: Because it waxes in waynes Sometimes you'll show up to
Speaker 1: the doctor and your hives won't be bad.
Speaker 5: So I was prepared with.
Speaker 1: Pictures and descriptors. You know, I was ready to go,
Speaker 1: and she didn't need any of that.
Speaker 5: She believed me. She knew what it was.
Speaker 4: After twenty years of desperately seeking answers, you'd found a
Speaker 4: doctor who knew what she was looking at. What did
Speaker 4: she say?
Speaker 5: She said how Chronic spontaneous urticaria.
Speaker 4: Also known as CSU. Doctor Kupta, expert in the field
Speaker 4: of allergy and immunology, explains.
Speaker 3: Chronic spontaneous urticaria is a specific type of condition where
Speaker 3: you've had hives for at least six weeks or longer
Speaker 3: and they come and go without any rib or reason.
Speaker 3: You can get them in the morning when you wake up,
Speaker 3: in the middle of the night, during the day, anytime
Speaker 3: of the day. Hives can also be called urticaria, and
Speaker 3: hives are caused by a chemical called histamine that's released
Speaker 3: in our body. And when histamine is released, it can
Speaker 3: cause hives. And histamine can be released because of an
Speaker 3: allergic reaction, but it can also be released outside of
Speaker 3: an allergic reaction. That's where it gets really confusing for
Speaker 3: people with chronic spontaneous urticaria, because those aren't hives related
Speaker 3: to an allergy.
Speaker 4: Do we know the root cause why some individuals have
Speaker 4: CSU and others don't.
Speaker 3: We're starting to see that it may be something called
Speaker 3: an autoimmune or an autoallergic condition within their body. And
Speaker 3: so what that means is that your body may be
Speaker 3: reacting to chemicals that are in your body normally and
Speaker 3: that may be causing mass cells to secrete the histamines
Speaker 3: with CSU.
Speaker 4: Are there triggers in terms of the flare up.
Speaker 3: Trigger can sometimes be a confusing word because sometimes when
Speaker 3: people think of triggers, they think that's the cause. So
Speaker 3: it's not the cause of those mass cells being activated.
Speaker 3: Your body would release those chemicals with or without that trigger,
Speaker 3: but that release may be enhanced if you're also exposed
Speaker 3: to that trigger. Triggers, maybe things like stress, maybe things
Speaker 3: like hot or hold weather, maybe things like certain foods.
Speaker 3: But even if we put somebody who had chronic spontaneous
Speaker 3: or to carry out in a bubble, they would still
Speaker 3: have hives because the body is doing something inside of
Speaker 3: itself that's causing the mass cells to release those chemicals.
Speaker 1: And it was so freeing for me, it really was.
Speaker 1: It was something that had nothing to do with any
Speaker 1: allergy at all. And I also found out at that
Speaker 1: time that we would probably never find out what caused it.
Speaker 1: And can I tell you what a relief that was
Speaker 1: to me.
Speaker 5: I know that sounds.
Speaker 1: Counterintuitive maybe, but I could stop trying to figure out
Speaker 1: what it was that this was. It was just something
Speaker 1: my body was doing, being overactive in its defense of itself.
Speaker 4: Finding a diagnosis for patients with this stabilitating condition after
Speaker 4: years of searching for answers is something doctor Gupta doesn't
Speaker 4: take for granted.
Speaker 3: You know, those are the good days, those are the
Speaker 3: great visits. Those are the visits that we wish we
Speaker 3: could just have on repeat, because those are the moments
Speaker 3: that every doctor wants with CSU, because the quality of
Speaker 3: life burden is so high when a patient finally gets relief.
Speaker 3: It is very rewarding and everyone feels so good.
Speaker 4: Kristen's visit with her own doctor was this way.
Speaker 1: I think that doctor really changed the way that I
Speaker 1: view this condition entirely. It was probably less than twenty
Speaker 1: minutes that first conversation I had with her, and she
Speaker 1: changed my life.
Speaker 5: She really did.
Speaker 2: When she said this has a name, and this is
Speaker 2: what we're going to do about it, and we have
Speaker 2: a plan. There is so much relief, so much relief
Speaker 2: and just having the name, because now you know what
Speaker 2: you're dealing with, and you have a strategy, something that
Speaker 2: you can do to improve your situation, to improve the symptoms,
Speaker 2: to improve your.
Speaker 4: Day to day.
Speaker 2: And I think just the joy, the relief that I
Speaker 2: think both of us spelt in that moment that was
Speaker 2: pretty profound.
Speaker 4: Were you familiar with CSU.
Speaker 2: Most of the patients that I would work with have
Speaker 2: other inflammatory processes going on, whether it be asthma or
Speaker 2: COPD or something like that, so they would always be
Speaker 2: coupled with other sorts of flare ups. But yeah, I
Speaker 2: had been familiar with CSU for years.
Speaker 4: Wow, So it must have been in that moment. It
Speaker 4: must have been as if you were standing so close
Speaker 4: to the puzzle, yes, that you couldn't see it.
Speaker 2: That is exactly how it was. It's like sometimes you
Speaker 2: feel like you're working the puzzle, but you don't have
Speaker 2: the picture for the box. You're just trying to frantically
Speaker 2: put pieces together. And that's a lot of what this
Speaker 2: felt like.
Speaker 4: After years on her diagnostic, Goddessy not only had found
Speaker 4: a name for her condition, but there was also a
Speaker 4: clear path forward. What did your doctor tell you about
Speaker 4: possible treatments?
Speaker 1: She said, The logical next step is to try a
Speaker 1: biologic if you're willing, And she told me all about it,
Speaker 1: and I would have done it in that very moment
Speaker 1: if I could have.
Speaker 4: For those who are not familiar, what is a biologic.
Speaker 3: Most medications are made from chemicals. Biologic medications are made
Speaker 3: from living organisms. It is a medication that targets a
Speaker 3: specific part of the body internally, and it helps shut
Speaker 3: things off or turn things on.
Speaker 4: So it almost seems like it is as close to
Speaker 4: a personalized, almost designer approach to a particular condition.
Speaker 1: I think it's one hundred percent as close as it
Speaker 1: can get in the situation to personalized medicine. I felt
Speaker 1: that my hives were getting the attention so did they deserve.
Speaker 3: When we first started seeing patients with CSU, we really
Speaker 3: only had antihistamines, and it was really frustrating for us
Speaker 3: as doctors and for patients because we weren't getting to
Speaker 3: that point where people were getting relief. Now we actually
Speaker 3: have three other medications that are approved for chronic spontaneous urticaria,
Speaker 3: and if one doesn't work, then we can reach for another.
Speaker 4: It was a game changer. Did you have any reservations
Speaker 4: at all about trying the biologic.
Speaker 1: I definitely was nervous because this was so new. I
Speaker 1: think anytime that they say, you know, we'll keep you
Speaker 1: in the office for a said amount of time after
Speaker 1: a monitor for anaphylaxis, that's nerve wrecking, right, even though
Speaker 1: you know how well this works in the safety profiles
Speaker 1: of certain drugs, you know, I think that would be
Speaker 1: nerve wrecking for anyone. But I was just filled with
Speaker 1: such hope. I think that something might change for me.
Speaker 2: I remember that she was getting ready to go for
Speaker 2: her first appointment for her biologic treatment, and she was
Speaker 2: pretty nervous about it. For many years, I had asthmatic
Speaker 2: patients who would come into the hospital and we would
Speaker 2: administer the biologic in the emergency room and have them
Speaker 2: sit and wait with us for forty five minutes or
Speaker 2: an hour. You just make sure they didn't have any
Speaker 2: adverse reactions. And so I was very familiar with these biologics,
Speaker 2: and I said, let me tell you what it's going
Speaker 2: to be like. And so I was able to share
Speaker 2: with her, you know, this is what they'll do, this
Speaker 2: is how the treatment will be. And I think we
Speaker 2: talked maybe that whole forty five minutes that she was
Speaker 2: in the waiting room. Finally the time was up and
Speaker 2: they let her go, and she said, oh, that wasn't
Speaker 2: bad at all.
Speaker 1: I had really hoped that the results would be, you know,
Speaker 1: within the first month they would be much better, and
Speaker 1: then I would expect not to see them again after that.
Speaker 4: But the results were not immediate. In fact, when months
Speaker 4: had passed and Kristen was still experiencing symptoms, she started
Speaker 4: to believe that maybe this treatment was not going to work.
Speaker 2: She was a little disappointed because it didn't seem to
Speaker 2: be working, and really questioning whether or not it was
Speaker 2: something that she should even continue because she wasn't getting
Speaker 2: any benefit from it. And I remember having the conversations
Speaker 2: with her of just stick it out. These things are
Speaker 2: not immediate. It took you a long time to get
Speaker 2: to this point. We need to give this biologic chance.
Speaker 2: We need to give this medication a chance to get
Speaker 2: in there and undo all of the things that have
Speaker 2: been done.
Speaker 1: I was losing hope, and I talked to a colleague
Speaker 1: who was a pharmacist and just said, can you help
Speaker 1: me to understand, you know, is it going to be
Speaker 1: this way forever? And he was talking with colleagues who
Speaker 1: said to him, you know, make sure she waits to
Speaker 1: six months. Let's just see what happens when she gets
Speaker 1: to six months. And I thought, okay, I can do that.
Speaker 1: Let's see what happens when we get to six months.
Speaker 4: And then early in twenty nineteen, twenty years after the
Speaker 4: first rash and six months after the biologic was administered,
Speaker 4: what happens.
Speaker 1: In my mind, it is almost as if a switch
Speaker 1: flipped at six months, almost exactly as they had said
Speaker 1: to me, and my hives were gone, absolutely gone.
Speaker 4: Even now looking back on this, I can I can
Speaker 4: feel your joy.
Speaker 5: I'm grinning like a goofball.
Speaker 4: How many years has it been?
Speaker 1: I think it has been I think it has been
Speaker 1: seven years. Wow, can you believe that I actually didn't
Speaker 1: start to say that I was in remission until this year,
Speaker 1: Believe it or not. I still keep a drawer full
Speaker 1: of Anahis tom Is just in case, and every once
Speaker 1: in a while I will have a hive and I
Speaker 1: do not panic.
Speaker 4: How have you seen life change for Kristen? Since she
Speaker 4: has gotten relief through effective treatment, she.
Speaker 2: Is finally comfortable in her own skin. She's not constantly
Speaker 2: thinking about, oh what if I had this flare up?
Speaker 2: Or I'm in the middle of this flare up? How
Speaker 2: can I possibly do all the things that I need
Speaker 2: to do? She can really just have a normal existence now,
Speaker 2: a normal life without the worry of always having that
Speaker 2: hanging over her head.
Speaker 1: One of the best things in life is being in
Speaker 1: a hot shower or being in a hot tub, a
Speaker 1: warm pool, or the warm ocean.
Speaker 5: And that was absolutely intolerable.
Speaker 1: And what a gift it is that I can have
Speaker 1: water touch my skin without misery.
Speaker 4: Wow, that just made me emotional.
Speaker 1: You know.
Speaker 4: It's if you a door opened and you were allowed
Speaker 4: to step back into living life fully.
Speaker 5: Yes, that's exactly right. That's exactly what it feels like.
Speaker 4: This is the perfect place to pivot into your advocacy work.
Speaker 4: Why is advocacy such a big part of your life today?
Speaker 1: I started an advocacy work because my father died of COPD.
Speaker 4: COPD stands for chronic obstructive pulmonary disease. It refers to
Speaker 4: a group of lung diseases that caused damage to the
Speaker 4: lungs over time.
Speaker 1: He was sixty five years old, he had only been
Speaker 1: retired two years, and his mother died at fifty seven
Speaker 1: of COPD as well. And I didn't even know that
Speaker 1: patient advocacy organizations existed until I found the COPD Foundation,
Speaker 1: And once there, I realized that there were all of
Speaker 1: these caring, bright motivated, passionate individuals working to improve the
Speaker 1: lives of people impacted by chronic disease every day.
Speaker 4: Kristin left the COPD Foundation in twenty twenty three to
Speaker 4: take a job as the vice president of Education for
Speaker 4: the Global Allergy and Airways Patient Platform. She is also
Speaker 4: the executive director of We See You, a nonprofit dedicated
Speaker 4: to empowering and improving the lives of those affected by
Speaker 4: chronic urticaria.
Speaker 1: It's amazing the world that opens up to you when
Speaker 1: you start listening to patients and their families, whether they
Speaker 1: live next door to you or whether they live on
Speaker 1: the other side of the globe. It is amazing what
Speaker 1: we can do for each other, how we can empower
Speaker 1: each other, educate each other. It's amazing how we can
Speaker 1: help to push others to better advocate for better care
Speaker 1: for themselves, or for physicians and other healthcare professionals to
Speaker 1: listen to them in a way they haven't before, to
Speaker 1: work with them in a way that they haven't before,
Speaker 1: or to even speak to lawmakers that they thought they
Speaker 1: would never meet in their lives. The power of patient
Speaker 1: advocacy is I feel limitless, and so I consider it
Speaker 1: an honor for us to be able to do this
Speaker 1: every day.
Speaker 5: I'm very lucky that this is what my journey has been.
Speaker 2: We work so closely with patients who are living with
Speaker 2: chronic illnesses. It changed our perspectives, hers in particular, because
Speaker 2: she can say, I understand exactly what you're talking about.
Speaker 2: I know what it's like to live with a chronic illness.
Speaker 2: But you don't have to be a victim of it.
Speaker 2: You can find your power and you can change this outcome,
Speaker 2: and I think that is really powerful for her.
Speaker 3: I think the most important thing that a provider needs
Speaker 3: to do is acknowledge those feelings, right, and acknowledge that
Speaker 3: the condition that they have, that they are dealing with
Speaker 3: a condition that's difficult, right. And so again, sometimes even patients,
Speaker 3: because it's not a life threatening condition, they get kind
Speaker 3: of confused and they feel like, am I overreacting? No,
Speaker 3: You're not overreacting. This is a big deal. You're not
Speaker 3: able to sleep, you're not able to function, you are
Speaker 3: feeling uncomfortable in your body, and you're also feeling self conscious.
Speaker 3: We are here in partnership and we're going to figure
Speaker 3: out which medication is going to work.
Speaker 4: And is there a new type of medication on the
Speaker 4: block when it comes to treating CSU.
Speaker 3: Just recently, we have another new option which is called
Speaker 3: a BTK inhibitor, and this is what we call a
Speaker 3: small molecule medication. And one of the things that we
Speaker 3: have seen with the BTK inhibitor is that it may
Speaker 3: work more quickly than biologics. All of these medications target
Speaker 3: different parts of the immune system and block that histamine
Speaker 3: ultimately from getting released. For me, more is better, I
Speaker 3: can't wait for more research to be done in this condition,
Speaker 3: in all conditions, so that we can really have options
Speaker 3: when one medication may not work for a patient, because
Speaker 3: at the end of the day, every human body is
Speaker 3: different and some people may respond to one medication and
Speaker 3: some people may respond to another medication. That we are
Speaker 3: in this field to help people feel better, and that's
Speaker 3: our ultimate goal at all times.
Speaker 4: Kristen, what do you hope that people take away from
Speaker 4: your story?
Speaker 1: You didn't even know you said it, but hope is
Speaker 1: what I hope they take away. I think that when
Speaker 1: we are in our darkest moments with a chronic condition,
Speaker 1: we often don't think that there's anyone out there working
Speaker 1: for us. We don't think that there are people who
Speaker 1: understand us, or other people who are going through what
Speaker 1: we've gone through, or healthcare professionals who can help us.
Speaker 2: Even if it feels like the condition is unbeatable, even
Speaker 2: if you feel like in the moment, oh, this is
Speaker 2: not getting any better, I'm tired. Even when it feels insurmountable,
Speaker 2: know that it isn't know that there are people out
Speaker 2: there all day, every day who have dedicated their lives
Speaker 2: to finding answers for you and people like you. They're
Speaker 2: doing the research, they're doing the clinical trials, They're out
Speaker 2: there trying to find answers to support you. So keep looking,
Speaker 2: keep searching. Find the right healthcare team that will not
Speaker 2: take no for an answer and will keep looking to
Speaker 2: find the right answers for you.
Speaker 1: No one knows you better than you know yourself, but
Speaker 1: a close second is somebody who experiences what you experience
Speaker 1: when it comes to a chronic disease. I think that communication,
Speaker 1: that community, that support, that peer to peer advocacy is irreplaceable.
Speaker 1: You do not have to suffer in silence alone or
Speaker 1: think this is something that you just have to adapt
Speaker 1: to for the rest of your life, because your life
Speaker 1: does not have to be like this.
Speaker 5: There is hope. There is hope.
Speaker 1: I'm Kristin Willard and it took me until my forties
Speaker 1: to figure out that I had chronic spontaneous urticaria and
Speaker 1: I am now a patient intermission and could not be
Speaker 1: happier to say that.
Speaker 4: You can learn more about we see you at Chronicdherdicaria
Speaker 4: dot org and you can find the Global Allergy and
Speaker 4: Airways Patient Platform at gaapp dot org. Coming up on
Speaker 4: next week's episode of Symptomatic, Michelle Shapiro had built a
Speaker 4: career helping others get healthy when she was hit with
Speaker 4: a debilitating health crisis.
Speaker 6: If I had to go to the bathroom, I had
Speaker 6: to literally lift myself up on my arms onto my
Speaker 6: computer chair, put myself on the floor crawl because if
Speaker 6: I put my feet on the ground, my heart rate
Speaker 6: fluctuations were so severe that I would then be an
Speaker 6: episode for days.
Speaker 4: Doctors were unable to identify the cause of her symptoms,
Speaker 4: no matter how hard Michelle pushed for answers. So unwell
Speaker 4: that she could barely function, Michelle made it her mission
Speaker 4: to get to the bottom of what was going on,
Speaker 4: only to find that the condition she was experiencing is
Speaker 4: still being understood by the medical community. As always, we
Speaker 4: would love to hear from you. Send us your thoughts
Speaker 4: on this episode, or share a medical mystery of your
Speaker 4: own at Symptomatic at iHeartMedia dot com, and please rate
Speaker 4: and review Symptomatic wherever you get your podcasts. We'll see
Speaker 4: you next time then till then be well. Symptomatic a
Speaker 4: medical mystery podcast, is a production of iHeartMedia's Ruby Studio.
Speaker 4: Our show is hosted by me Lauren bry Pacheco. Our
Speaker 4: executive producers are James Foster, Matt Ramano, and myself. Our
Speaker 4: supervising producers are Ryan Ovadia, Haley Aliah Erickson, and Daniel Ainsworth.
Speaker 4: This episode was written by Haley Aliah Erickson and edited
Speaker 4: by Samuel Richardson.