Case #13: Alisha

How can I prevent people from seeing this condition?

You're always overthinking.

It's not her, it's them and their insecurities that show when they don't understand or care to ask questions.

The biggest misconception is that it's contagious. It is in no way contagious because it is a genetically transmitted disease.

I stopped going to the doctor, I stopped trying to find treatments.

Nothing was working.

I'm going to have this condition for the rest of my life and there's nothing that I can do about it.

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 all Americans suffer from some chronic illness, and many struggle for an accurate diagnosis. These are their stories. A Lauren Brage Pacheco and this is symptomatic. Alicia Bridges is an undeniably charismatic person brimming

So I love to meditate.

I got into meditation about two years ago and I did a challenge for myself where I meditated every day for a year and it absolutely changed my life. I love hiking and nature, comedy, hanging out with friends.

I love lo Fi.

I swear to you, the older I get, the more a good instrumental can just like make my entire day. I have a low fi playlist that I take with me when I go to the park to meditate.

Oh my gosh, I need you to send it to mat Or.

On the same page, I would describe Alicia as super outgoing, a big ball of energy, and an active participant in controlling the room.

She has a lot of personality.

That's Alicia's ex husband Alan. They met while at college at Alabama State, where they were both quick to notice each other. Well, there's another reason that you guys could make eye contact. You're both tall.

Yes, I am six ' two and he's six ' five sixty six.

He's very tall.

It's not very often that you see an attractive six foot two person this woman. So I was immediately like, yo, who is that?

And you're still friends today?

Yes, we have a very healthy friendship. You know, I always have to tell people i'm dating. I'm like, I know, it's weird, but it's like we're family. Like I've been knowing him since I was nineteen, and in a sense we've grown up together.

A partnership that would be instrumental along extremely tough parts of Alicia's twenty year journey in search of proper treatment for her chronic illness. The first signs of this life altering disease started when she was very young. When was the first time you remembered having a symptom where you thought something was different or something was wrong.

I remember when I was young, I had very flaky, dry knees and elbows, but we did not realize that that was the precursor to a chronic illness. We just thought that I had really dry skin. And it wasn't until I had chicken pox. And after the chicken pox went away, my grandmother kind of noticed that the sores or the scarring that you typically get when you have chicken pox seemed to be manifesting into something else. And

While many people struggle to find a diagnosis, the journey to find a treatment can be just as tricky and troublesome, and that was the case for Alicia. Getting diagnosed with severe plaqusoriasis at just seven years old was actually the easy part of her journey. Now she had to try to find a treatment that would bring her some relief from both the physical and mental strain of living with her condition. Were you afraid? What did you think was happening?

I think at seven years old, it was hard for me to comprehend exactly what was going on because I remember being that age and still wearing short sleeves and shorts. I was about ninety percent covered at that point, and even though I knew that I was different, it hadn't hit me.

How society would view me.

And I remember becoming aware of that in the fifth grade when I was ten, because that's when I started covering up. That's when I started wearing long sleeves, pants, and one hundred degree weather, and that was the first time I started to really feel shame and what that meant sir risis really started to impact me emotionally, my self esteem and self value and how I viewed myself.

People with pariasis and other conditions like it feel like they are fighting the battle alone, and people may not know you're suffering with it. A lot of times it's in a hidden area.

That's doctor Jonathan Weiss, an adjunct Assistant Clinical Professor of Dermatology at Emory University and the co managing partner of Georgia Dermatology Partners. He and Alicia have formed a strong bond from their overlapping advocacy work for sariasis. What would be your most concise definition of whatsoriasis.

Is to the average Individualsariasis is a red scaly skin condition that affects people with the genetic predisposition to the disease. It can have various symptoms including itching, burning, stinging, or it can just be disfigurement that some people have to endure.

Is it on a spectrum in terms of its severity?

Psoriasis severity can be defined in several ways. There is the objective severity what we see, and there is the personal severity that someone experiences, and the two can be totally incongruous. There's also with an objective severity two types. There's lesional severity. How red is it, how scaly is it?

You know?

How itchy is it? How is it symptomatic? The other part of severity is extent, and that's how people have always looked at it. Only people who had extensive psoriasis had severe psoriasis. But to me, you have to strike a combination of those that even the person with a small extent of psoriasis can have severe disease if it is in the wrong area and it is affecting their quality of life.

Can you describe what it looked like, what you remember it looking like at seven.

Having no real clear skin except on my face and my neck, my entire body was covered with itchy, flaky, brown, crusty patches of dry, inflamed skin. It cracked, it bled, It sometimes felt like my body was being attacked by ants. These little feelings of like itchiness all over your body, and there's nothing that you can do to relieve it. My skin felt rough. I really did not have any type of healthy skin. Sariasis was literally all over my body except my face at the time.

Given the way in which it presents. You know, there's a lot of fear and misunderstanding about the disease. Can you explain the most prevalent misconceptions you hear about psoriasis?

The biggest misconception is that it's contagious. It is in no way contagious because it is a genetically transmitted disease. A family where like a mother or a sibling may have psoriasis and another member of the family has led to some of the misconception that it's spreading within a household, which it absolutely is not.

Just seven years old and diagnosed with something she had no clue how to control, let alone truly understand. As Alicia moved up in elementary school and gained a bit more self awareness, the impact of her condition quickly started to feel even heavier. Can you just talk to me about how your friends and your classmates reacted to you.

Yeah.

I remember being in the fifth grade and I started lying about having psoriasis. I would tell my classmates that I had eczema because I found when I would say sariasis, nobody knew what that was, and so it would force me, as a ten year old girl, to have to explain it. And I hardly knew exactly what was going on with my body throughout my experience of like elementary and high school.

Alicia started treatment soon after being diagnosed, embarking on a long journey to find relief from pariasis as the condition increasingly spread over her body. She was willing to try anything the doctors prescribed. What were the different lines of treatment that you remember going through as a kid from the age of seven and did anything work?

Absolutely nothing worked for me. Since I was under eighteen, there were lots of treatments that I was not allowed to use because of my age. But during that time, I use phototherapy. Photo therapy is like when they put you in something that looks like a tann In booth.

And they use uv B light, and that UVB light is.

Supposed to slow down the progression of your skin cells by producing like vitamin D. I did that for years with absolutely no results. I also did something called occlusion, where they put like tar or steroid all over your body. They put you in pajamas, they wet the pajamas, and then they put you in a plastic suit like people work out in and when they want to lose weight. And I had to sit in that for eight hours a day for about four weeks, Monday through Friday. It

Oh my gosh.

So on top of having this uncomfortable, embarrassing, painful condition, treatment for it became a full time.

Job at points of your life, for.

Sure, especially for my grandparents.

Like my grandmother was the one who was taking me to my light therapy treatment forty five days a year, you know, to a hospital that was miles away. It took money, gas, it just it and then depending on the insurance issues, sometimes we had to go an hour and a half away, two hours away for it to never worked.

I'm sure that there's a huge need for more research, particularly within skin of color and how it reacts to different conditions.

For many, many years, dermatology has been focused on white skin and disease states in Caucasian individuals. The other issue is the symptoms that bother people with different skin types are totally different.

And were there ever any lulls? Were you always having some kind of flare up or another.

I was always flaired from seven years old up until about twenty seven.

I was ninety percent covered with the rises.

Oh my lord, what did that do to you? Emotionally? Did it isolate you?

It always made made me feel like I wasn't good enough. Sometimes I think it had an impact on me being my true and full self, because it's like, yeah, I would love to play sports, but I don't want to wear the uniforms. Yeah I would love to be a part of this school pageant, but I don't want to have to wear the gowns or the swimsuit that goes with it in front of all of my peers. So it definitely impacted how I viewed myself, my self, value, my self, love, Sometimes I felt like nobody else would

Yeah, did you feel at times like it was a curse.

There were definitely times where I felt like I was cursed, where I would ask what did I do to deserve this? You feel out of control because it's like, this is my body, why is it doing this to be I just gave up on finding treatment because I said, you know what, I'm just going to be like this for the rest of my life.

So I just got to get used to it.

Having treated siiasis for nearly forty years, doctor Weiss is sadly all too familiar with the emotional and mental toll of this very visible disease.

It is a condition that is truly emotionally devastating for some, especially for those where the plaques of psoriasis are visible to other people and in a society that is so conscious of appearance. It is totally devastating to somebody and can really affect your inner action with the rest of the world, out of embarrassment, out of other people's misconceptions that you should be doing more.

I remember I had got into an argument with some girls in my neighborhood and they started a rumor that my grandparents were burning me with cigarettes. At that age, I didn't know how to advocate for myself. But it's moments like that that I've had to deal with.

It's impossible to fully comprehend the toll of such stress on a young child. But proving her unimaginable resilience, Alicia simply continued to live with her painful plaques. She would eventually find powerful acceptance along the way and a teller of support when she met Alan. He didn't change his perception of her or their relationship when he found out about her ongoing struggle.

I remember when him and I first started dating. I did not want to show him my skin, and I'm like, how am I going to tell him that I have soriasis? And this is probably the first serious dating situation I had been in, And so I played a question game. I asked a question like, if there's something you would change about yourself, what would it be? You know? And he said his answer, and then I said poriasis.

And then that's kind of how I brought it up to him.

It was really a non factor to me. It meant a lot for her to just address it.

And then I kind of saw how he responded, which, you know, he asked a couple more questions, but it was not a big deal to him at all, and so it was his reactions to me sharing little things like this that made me feel more comfortable.

She had then kind of told me stories about other instances dealing with young people and whatnot at the time. And you know, people are weird. It's not her, it's them and their insecurities that show when they don't understand their care to ask questions.

I remember watching a movie with him and I was like, Okay, I'm gonna wear a short sleeve shirt, like that was such a big deal.

So I went in the bathroom. I was so nervous.

I put my short sleeve shirt on and I came back in the room and you know, he kissed my arm and he was like, it's okay.

Seven years old. Through college, looking back, you guys never stopped trying to find the next thing that could be the cure, could be the answer. How many things do you think you tried.

I tried so many treatments. I mean, off the top of my head. From then until now, I've probably been on fifteen different treatments. Yeah, topical oral topical oral injections. Then you have you know, the phototherapy, the occlusion which doesn't go under those umbrellas, and even diet change. It's

Tell me the point where you hit rock bottom in terms of thinking that you could ever be cured. How old were you and what happened.

I was twenty one, twenty two years old, and I had finally got my own health insurance, so I had a little bit more control than what I had in the past, and this doctor ended up putting me on my first injection. I was just so hopeful because my whole time in high school, I was like, if I can just get on this injection and get rid of my crisis, life will be great. And I was on that injection for about nine months and it did absolutely nothing, and at that point I was like, I'm over this.

Alicia was exhausted from relentlessly searching for any treatment that would help her alleviate her symptoms and bring her more comfort in her own skin. She'd gone from desperate for answers to discouraged and unsure if they would ever come.

I stopped once to the doctor. I stopped trying to find treatments. Nothing was working. I'm going to have this condition for the rest of my life and there's nothing that I can do about it.

We'll be right back with Symptomatic, a medical mystery podcast.

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Now back to Symptomatic a medical mystery podcast and being diagnosed with severe plaquoriasis at just seven years old, Alicia tried every treatment available. Seeing it spread to nearly ninety percent of her body, She was desperate for a little reprieve from both the physical symptoms and more importantly, from the shame she felt when people would see and judge her condition. Now over twenty years into her journey to find a treatment, she was ready to give up on

All the time.

Even when I went shopping for clothes, I would literally have to navigate the way I put on my pants because I didn't want people well to look at the bottom of the dressing room and see my soriasis field legs. You always have to live with, Like, how can I prevent people from seeing this condition? You're always overthinking.

Alicia had reached a point of almost accepting plaque soriasis as a major part of her life. She began going to soriasis community events in order to meet other people going through similar struggles and hope of finding support. Little did she realize that the longing for connection would lead her to doctor Jamie Weisman, whose Karen advocacy would start an entirely new chapter in Alicia's life. So you mentioned

Doctor Weisman is one of the smartest, most talented dermatologists I know. I'm the adjunct faculty at Emory. She was a resident and she wanted to get into research, and she has been an amazing researcher and thought leader in helping develop the treatments we have now for soriasis, for a topic, dermatitis, and several other conditions.

A doctor entered your life who gave you hope. How did you first cross paths with doctor Weisman?

So?

I was around twenty six years old.

I have been a volunteer with the National Soiriasis Foundation since twenty eleven. I think around twenty three, twenty four and so there was an event in Atlanta, Georgia, a National Soiriasis event, and I went. I can't even remember what the event was about, but I do remember meeting doctor Wiseman. So we started having a conversation and she's like, yeah, I'm a doctor here in Atlanta. I showed her my skin and she was like, I can get you cleared up.

Wow, I'm so happy that you guys crossed paths. What did you think when she first told you I can take care of us?

The hope started to come back because I had never met a doctor that was so confident, you know, Like she was so confident with saying she could clear my skin. And so I just remember saying, Okay, I'm married through the National Crisis Foundation.

She does a lot of research.

Let me let my guard down a little bit, let me be vulnerable, and let me go see what she suggests.

I think that Alicia, when she started seeing doctor Wiseman, I think she felt that doctor Wiseman really had her best interest in mind in getting better, and then just look at her as another patient, right that concern of, hey, this person really is looking to me for help.

So I went to the appointment. You know, she surveyed my skin. Of course, She's like, you have a very severe case of plaxrisis. She started talking about the different clinical trials she was working on at the time. I think it's very special when you have a doctor who does clinical trials because they get to see the behind the scenes of what's going on with these treatments, through

But I was so happy not to be ninety percent.

Covered, eighty percent cleared. That was a huge win. Just after the first treatment with doctor Weisman, these newly created and cutting edge biologics were finally alleviating in a significant way Alicia's symptoms. Can you define and explain exactly what biologics are what that means.

Biologics are medications that are produced by other living organisms, and so they have to go through a very complex process to be produced, and they target specific chemicals in the cascade of immunologic changes that occur in soriasis patients.

I go to see her from my check in and she's like, that's.

Good, but I can get you clearer than that, and she starts talking about another another injection, and I was like, no, I think I'm okay right here. So after a while, the injection was not working as good as it was when I first started, so I went back to her and she's like, we can put you on something else. I'm at this point for biologics in but every biologic that she has given me has worked up until about two years, and then sometimes what happened is your body

I'm just so grateful for.

Her due diligence, her willingness to stay educated on people of all colors, and for fighting for me to get the treatment that I needed.

Do you remember the first time you saw her with clear skin?

Yeah, I sure do. And she was so happy, just the way she talked to people who wanted to go out more. You know, she was wearing short sleeves and those things mattered to her right and you could just see the confidence that she would walk with, and she just had this glow about her, and I was just like, Wow, look at her. God, that's what's up.

Since the age of seven, Alicia had been searching for a treatment to help with the debilitating burden that psoriasis had placed on her life. It felt like every day was consumed by her efforts to hide her skin. But now she found a new doctor and a new treatment that brought her near instant relief and was allowing her to take back her life piece by piece.

I remember getting an emotional thinking to myself, I'm never gonna experience what the rain feels like on my bear skin, or what it means to go to the beach and get into the water in peace.

So I cherish those moments now.

If it starts raining and I'm outside, I don't rush it because I remember the past me that never thought something as simple as feeling the rain on your skin without shame.

Could ever happen.

And so what that moment taught me is self love cannot be based on if this happens or that happens.

Self love has to be unconditional.

It has to be compassionate, It has to be empathetic. It can't be deals in bargains because you change so much.

The biologics not only help treat her psoriasis symptoms, but also allowed Alicia to be more at peace with herself, and she's channeled that into advocacy for others with zoriasis.

When I was growing up, there was nobody I could pinpoint that has Torina like me, and so once I got old enough, I made it a goal and a duty to make sure that another little seven year old Alicia would not have to fill alone. I have worked to tell my story so that other people who are like me can know that they're not alone, so that the people who don't have to risis can learn empathy and compassion, but also to change what's happening in research.

I don't want.

Another seven year old to feel like there's nobody like her. I want her to be able to come on Instagram, Facebook, online and say, oh my gosh, that woman can relate.

To me because she's had this experience too.

What do you want people to take away from your story?

I want people to understand that we all have struggles, said and Unseid and to treat people that you may not understand, whether it's through their actions or through their physical body. Treat people with empathy and compassion and just know that there is an inner story, there's a life that everybody is going through that they're dealing with, and to just be kind.

I think her life is going to be so fulfilling because she is doing what we all hope to do, and that is making an impact for a large group of people. And I really feel she's leaving a legacy for many, many years for patients with psoriasis.

Alicia is a prime example of you never ever ever give up, no matter how you feel, no matter what the situation is, there's always light at the end of the tunnel. She's been on the cover of magazines, she's a growing comedian, now, she's writing a book. She's doing so many great things, and I believe that she would not be where she is today if she would have given up.

So take a step back, give more compassionate empathy, and judge people less because you just don't know what a person is going through.

If you want to find out more information about plaque psoriasis, go to the National Psoriasis Foundation's website. At psoriasis dot org. You can also find helpful resource is through the Global Healthy Living Foundation at GHLF dot org.

I am Alicia Bridges. I was diagnosed with psoriasis at seven years old, and it took me a little over two decades to find an effective treatment.

On the next episode of Symptomatic, doctor Maria de Leone goes from doctor to patient as she rushes to get a diagnosis before she loses all of her motor skills.

I started noticing that I was not always able to put on my shoes because I were trying. I tried to put on my shoes, my foot would get cramped and distorted and I'll.

Fall, Like what in the heck?

I was having a hard time turning the keys of my door, you know. I was like fumbies, Like I could not put it in and turn it.

The mystery ailment turns out to be something Maria should have seen coming from the beginning. That's it for this episode of Symptomatic. Thank you for listening. What did you think of this episode? We would love to hear from you. Send us your thoughts or share a medical mystery of your own at Symptomatic at iHeartMedia dot com. And please don't forget to rate and review this podcast wherever you're listening. Symptomatic and Medical Mystery Podcast is a production of Ruby

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