WEBVTT - Case #13: Alisha 0:00:04.200 --> 0:00:09.160 How can I prevent people from seeing this condition? 0:00:09.640 --> 0:00:12.160 You're always overthinking. 0:00:12.400 --> 0:00:15.920 It's not her, it's them and their insecurities that show 0:00:16.000 --> 0:00:18.520 when they don't understand or care to ask questions. 0:00:19.280 --> 0:00:23.439 The biggest misconception is that it's contagious. It is in 0:00:23.560 --> 0:00:27.880 no way contagious because it is a genetically transmitted disease. 0:00:28.240 --> 0:00:31.240 I stopped going to the doctor, I stopped trying to 0:00:31.600 --> 0:00:32.680 find treatments. 0:00:33.040 --> 0:00:34.040 Nothing was working. 0:00:34.520 --> 0:00:37.960 I'm going to have this condition for the rest of 0:00:37.960 --> 0:00:41.320 my life and there's nothing that I can do about it. 0:00:48.320 --> 0:00:51.920 How terrifying would it be to fight an unknown enemy, 0:00:52.440 --> 0:00:56.280 one you didn't recognize and didn't see coming. What if 0:00:56.320 --> 0:01:00.400 that enemy was coming from within a disease that even 0:01:00.520 --> 0:01:06.160 doctors couldn't identify. Nearly half of all Americans suffer from 0:01:06.240 --> 0:01:10.920 some chronic illness, and many struggle for an accurate diagnosis. 0:01:12.000 --> 0:01:18.600 These are their stories. A Lauren Brage Pacheco and this 0:01:19.080 --> 0:01:39.560 is symptomatic. Alicia Bridges is an undeniably charismatic person brimming 0:01:39.600 --> 0:01:43.280 with creativity. She's not afraid of exploring most creative outlets, 0:01:43.360 --> 0:01:47.440 from writing a book to performing stand up comedy. But 0:01:47.680 --> 0:01:51.000 behind her unstoppable personality is a long battle with a 0:01:51.280 --> 0:01:55.920 very stifling and painful medical condition, one she's had to 0:01:56.000 --> 0:02:00.080 challenge by cultivating self love and mental fortitude. 0:02:00.480 --> 0:02:02.600 So I love to meditate. 0:02:02.800 --> 0:02:06.200 I got into meditation about two years ago and I 0:02:06.240 --> 0:02:11.839 did a challenge for myself where I meditated every day 0:02:11.880 --> 0:02:15.320 for a year and it absolutely changed my life. I 0:02:15.400 --> 0:02:20.800 love hiking and nature, comedy, hanging out with friends. 0:02:20.919 --> 0:02:21.880 I love lo Fi. 0:02:22.160 --> 0:02:24.920 I swear to you, the older I get, the more 0:02:25.160 --> 0:02:28.440 a good instrumental can just like make my entire day. 0:02:28.520 --> 0:02:31.280 I have a low fi playlist that I take with 0:02:31.400 --> 0:02:33.200 me when I go to the park to meditate. 0:02:33.280 --> 0:02:36.280 Oh my gosh, I need you to send it to 0:02:36.440 --> 0:02:37.440 mat Or. 0:02:37.440 --> 0:02:44.600 On the same page, I would describe Alicia as super outgoing, 0:02:45.280 --> 0:02:49.640 a big ball of energy, and an active participant in 0:02:49.680 --> 0:02:50.519 controlling the room. 0:02:50.639 --> 0:02:51.960 She has a lot of personality. 0:02:52.639 --> 0:02:55.800 That's Alicia's ex husband Alan. They met while at college 0:02:55.840 --> 0:02:59.040 at Alabama State, where they were both quick to notice 0:02:59.080 --> 0:03:02.359 each other. Well, there's another reason that you guys could 0:03:02.400 --> 0:03:04.480 make eye contact. You're both tall. 0:03:04.760 --> 0:03:09.440 Yes, I am six ' two and he's six ' 0:03:09.440 --> 0:03:10.400 five sixty six. 0:03:10.880 --> 0:03:11.680 He's very tall. 0:03:12.320 --> 0:03:14.880 It's not very often that you see an attractive six 0:03:14.960 --> 0:03:18.480 foot two person this woman. So I was immediately like, yo, 0:03:18.520 --> 0:03:18.880 who is that? 0:03:19.919 --> 0:03:21.160 And you're still friends today? 0:03:21.680 --> 0:03:25.360 Yes, we have a very healthy friendship. You know, I 0:03:25.360 --> 0:03:27.920 always have to tell people i'm dating. I'm like, I know, 0:03:27.960 --> 0:03:30.320 it's weird, but it's like we're family. Like I've been 0:03:30.360 --> 0:03:32.560 knowing him since I was nineteen, and in a sense 0:03:32.639 --> 0:03:34.320 we've grown up together. 0:03:35.640 --> 0:03:40.120 A partnership that would be instrumental along extremely tough parts 0:03:40.480 --> 0:03:43.800 of Alicia's twenty year journey in search of proper treatment 0:03:43.880 --> 0:03:47.440 for her chronic illness. The first signs of this life 0:03:47.480 --> 0:03:51.560 altering disease started when she was very young. When was 0:03:51.600 --> 0:03:54.920 the first time you remembered having a symptom where you 0:03:55.000 --> 0:03:57.840 thought something was different or something was wrong. 0:03:58.640 --> 0:04:02.360 I remember when I was young, I had very flaky, 0:04:03.360 --> 0:04:07.840 dry knees and elbows, but we did not realize that 0:04:07.840 --> 0:04:12.520 that was the precursor to a chronic illness. We just 0:04:12.560 --> 0:04:16.159 thought that I had really dry skin. And it wasn't 0:04:16.279 --> 0:04:19.839 until I had chicken pox. And after the chicken pox 0:04:19.880 --> 0:04:23.760 went away, my grandmother kind of noticed that the sores 0:04:24.040 --> 0:04:26.680 or the scarring that you typically get when you have 0:04:26.839 --> 0:04:31.000 chicken pox seemed to be manifesting into something else. And 0:04:31.040 --> 0:04:35.279 my grandmother took me to the doctor. They surveyed my 0:04:35.360 --> 0:04:38.880 skin and determined that I had psoriasis. 0:04:40.880 --> 0:04:44.320 While many people struggle to find a diagnosis, the journey 0:04:44.360 --> 0:04:47.560 to find a treatment can be just as tricky and troublesome, 0:04:48.000 --> 0:04:51.520 and that was the case for Alicia. Getting diagnosed with 0:04:51.560 --> 0:04:55.479 severe plaqusoriasis at just seven years old was actually the 0:04:55.600 --> 0:04:58.479 easy part of her journey. Now she had to try 0:04:58.480 --> 0:05:01.000 to find a treatment that would bring her some relief 0:05:01.200 --> 0:05:04.359 from both the physical and mental strain of living with 0:05:04.400 --> 0:05:08.880 her condition. Were you afraid? What did you think was happening? 0:05:09.480 --> 0:05:11.600 I think at seven years old, it was hard for 0:05:11.640 --> 0:05:15.440 me to comprehend exactly what was going on because I 0:05:15.480 --> 0:05:19.799 remember being that age and still wearing short sleeves and shorts. 0:05:20.360 --> 0:05:23.400 I was about ninety percent covered at that point, and 0:05:23.440 --> 0:05:28.000 even though I knew that I was different, it hadn't 0:05:28.080 --> 0:05:28.560 hit me. 0:05:29.080 --> 0:05:31.160 How society would view me. 0:05:31.960 --> 0:05:36.520 And I remember becoming aware of that in the fifth 0:05:36.520 --> 0:05:39.479 grade when I was ten, because that's when I started 0:05:39.520 --> 0:05:44.080 covering up. That's when I started wearing long sleeves, pants, 0:05:44.160 --> 0:05:46.840 and one hundred degree weather, and that was the first 0:05:46.920 --> 0:05:51.000 time I started to really feel shame and what that 0:05:51.200 --> 0:05:55.719 meant sir risis really started to impact me emotionally, my 0:05:56.080 --> 0:05:59.600 self esteem and self value and how I viewed myself. 0:06:03.760 --> 0:06:07.479 People with pariasis and other conditions like it feel like 0:06:07.600 --> 0:06:11.839 they are fighting the battle alone, and people may not 0:06:12.040 --> 0:06:14.120 know you're suffering with it. A lot of times it's 0:06:14.120 --> 0:06:15.080 in a hidden area. 0:06:15.760 --> 0:06:19.640 That's doctor Jonathan Weiss, an adjunct Assistant Clinical Professor of 0:06:19.640 --> 0:06:23.640 Dermatology at Emory University and the co managing partner of 0:06:23.680 --> 0:06:27.760 Georgia Dermatology Partners. He and Alicia have formed a strong 0:06:27.880 --> 0:06:32.800 bond from their overlapping advocacy work for sariasis. What would 0:06:32.800 --> 0:06:38.919 be your most concise definition of whatsoriasis. 0:06:38.000 --> 0:06:44.520 Is to the average Individualsariasis is a red scaly skin 0:06:44.640 --> 0:06:50.400 condition that affects people with the genetic predisposition to the disease. 0:06:50.680 --> 0:06:54.920 It can have various symptoms including itching, burning, stinging, or 0:06:55.040 --> 0:06:59.760 it can just be disfigurement that some people have to endure. 0:07:00.760 --> 0:07:03.640 Is it on a spectrum in terms of its severity? 0:07:04.560 --> 0:07:09.200 Psoriasis severity can be defined in several ways. There is 0:07:09.240 --> 0:07:13.880 the objective severity what we see, and there is the 0:07:13.960 --> 0:07:17.960 personal severity that someone experiences, and the two can be 0:07:18.040 --> 0:07:22.720 totally incongruous. There's also with an objective severity two types. 0:07:23.320 --> 0:07:28.000 There's lesional severity. How red is it, how scaly is it? 0:07:28.080 --> 0:07:28.240 You know? 0:07:28.320 --> 0:07:31.680 How itchy is it? How is it symptomatic? The other 0:07:32.160 --> 0:07:35.280 part of severity is extent, and that's how people have 0:07:35.400 --> 0:07:38.840 always looked at it. Only people who had extensive psoriasis 0:07:38.920 --> 0:07:41.720 had severe psoriasis. But to me, you have to strike 0:07:41.760 --> 0:07:44.800 a combination of those that even the person with a 0:07:44.840 --> 0:07:48.920 small extent of psoriasis can have severe disease if it 0:07:49.000 --> 0:07:51.720 is in the wrong area and it is affecting their 0:07:51.800 --> 0:07:52.640 quality of life. 0:07:54.000 --> 0:07:57.040 Can you describe what it looked like, what you remember 0:07:57.080 --> 0:07:58.600 it looking like at seven. 0:08:01.000 --> 0:08:06.040 Having no real clear skin except on my face and 0:08:06.080 --> 0:08:14.520 my neck, my entire body was covered with itchy, flaky, brown, 0:08:15.360 --> 0:08:21.360 crusty patches of dry, inflamed skin. It cracked, it bled, 0:08:22.240 --> 0:08:27.200 It sometimes felt like my body was being attacked by ants. 0:08:27.920 --> 0:08:31.840 These little feelings of like itchiness all over your body, 0:08:31.880 --> 0:08:34.520 and there's nothing that you can do to relieve it. 0:08:35.000 --> 0:08:39.559 My skin felt rough. I really did not have any 0:08:39.679 --> 0:08:44.360 type of healthy skin. Sariasis was literally all over my 0:08:44.440 --> 0:08:47.600 body except my face at the time. 0:08:48.480 --> 0:08:50.839 Given the way in which it presents. You know, there's 0:08:50.880 --> 0:08:56.120 a lot of fear and misunderstanding about the disease. Can 0:08:56.240 --> 0:09:02.520 you explain the most prevalent misconceptions you hear about psoriasis? 0:09:03.440 --> 0:09:07.600 The biggest misconception is that it's contagious. It is in 0:09:07.720 --> 0:09:12.040 no way contagious because it is a genetically transmitted disease. 0:09:12.679 --> 0:09:15.880 A family where like a mother or a sibling may 0:09:15.920 --> 0:09:19.240 have psoriasis and another member of the family has led 0:09:19.280 --> 0:09:22.439 to some of the misconception that it's spreading within a household, 0:09:22.679 --> 0:09:23.920 which it absolutely is not. 0:09:25.559 --> 0:09:28.480 Just seven years old and diagnosed with something she had 0:09:28.559 --> 0:09:32.640 no clue how to control, let alone truly understand. As 0:09:32.640 --> 0:09:35.240 Alicia moved up in elementary school and gained a bit 0:09:35.320 --> 0:09:39.240 more self awareness, the impact of her condition quickly started 0:09:39.240 --> 0:09:42.880 to feel even heavier. Can you just talk to me 0:09:42.920 --> 0:09:46.400 about how your friends and your classmates reacted to you. 0:09:46.960 --> 0:09:47.200 Yeah. 0:09:47.240 --> 0:09:52.720 I remember being in the fifth grade and I started 0:09:52.840 --> 0:09:57.160 lying about having psoriasis. I would tell my classmates that 0:09:57.200 --> 0:10:01.240 I had eczema because I found when I would say sariasis, 0:10:01.679 --> 0:10:05.080 nobody knew what that was, and so it would force me, 0:10:05.320 --> 0:10:08.360 as a ten year old girl, to have to explain it. 0:10:08.400 --> 0:10:11.559 And I hardly knew exactly what was going on with 0:10:11.600 --> 0:10:17.960 my body throughout my experience of like elementary and high school. 0:10:18.520 --> 0:10:21.480 I remember one time I was in the tenth grade 0:10:21.760 --> 0:10:25.480 and I was sitting in a humanities class and I 0:10:25.520 --> 0:10:28.600 guess my shirt rised up a little bit and I 0:10:28.679 --> 0:10:32.640 heard a classmate behind me say, ugh, what is on 0:10:32.720 --> 0:10:37.560 her skin? That is absolutely disgusting. And I remember sitting 0:10:37.600 --> 0:10:40.920 there trying to determine whether or not I was going 0:10:41.040 --> 0:10:47.360 to speak up or let it go, and I decided 0:10:47.360 --> 0:10:47.920 to let it go. 0:10:50.240 --> 0:10:54.200 Alicia started treatment soon after being diagnosed, embarking on a 0:10:54.280 --> 0:10:58.320 long journey to find relief from pariasis as the condition 0:10:58.440 --> 0:11:01.959 increasingly spread over her body. She was willing to try 0:11:02.040 --> 0:11:06.600 anything the doctors prescribed. What were the different lines of 0:11:06.720 --> 0:11:10.079 treatment that you remember going through as a kid from 0:11:10.120 --> 0:11:12.280 the age of seven and did anything work? 0:11:13.120 --> 0:11:16.960 Absolutely nothing worked for me. Since I was under eighteen, 0:11:17.320 --> 0:11:20.760 there were lots of treatments that I was not allowed 0:11:20.760 --> 0:11:23.920 to use because of my age. But during that time, 0:11:24.160 --> 0:11:27.880 I use phototherapy. Photo therapy is like when they put 0:11:27.920 --> 0:11:30.199 you in something that looks like a tann In booth. 0:11:31.400 --> 0:11:34.959 And they use uv B light, and that UVB light is. 0:11:34.880 --> 0:11:39.000 Supposed to slow down the progression of your skin cells 0:11:39.240 --> 0:11:43.400 by producing like vitamin D. I did that for years 0:11:43.520 --> 0:11:47.559 with absolutely no results. I also did something called occlusion, 0:11:47.920 --> 0:11:53.080 where they put like tar or steroid all over your body. 0:11:53.520 --> 0:11:56.520 They put you in pajamas, they wet the pajamas, and 0:11:56.520 --> 0:11:58.960 then they put you in a plastic suit like people 0:11:59.400 --> 0:12:01.320 work out in and when they want to lose weight. 0:12:01.920 --> 0:12:04.640 And I had to sit in that for eight hours 0:12:05.320 --> 0:12:09.120 a day for about four weeks, Monday through Friday. It 0:12:09.200 --> 0:12:12.720 did absolutely nothing for my skin. I've done almost every 0:12:12.760 --> 0:12:16.680 topical that you can think of forsoriasis. I took oral 0:12:16.760 --> 0:12:20.640 medication and then as soon as you stop, your psoriasis 0:12:20.679 --> 0:12:23.680 could come back almost worse than it was when you 0:12:23.720 --> 0:12:24.640 started the treatment. 0:12:25.679 --> 0:12:26.320 Oh my gosh. 0:12:26.360 --> 0:12:33.000 So on top of having this uncomfortable, embarrassing, painful condition, 0:12:34.080 --> 0:12:36.760 treatment for it became a full time. 0:12:36.679 --> 0:12:39.199 Job at points of your life, for. 0:12:39.200 --> 0:12:42.040 Sure, especially for my grandparents. 0:12:42.120 --> 0:12:44.840 Like my grandmother was the one who was taking me 0:12:44.960 --> 0:12:48.040 to my light therapy treatment forty five days a year, 0:12:48.720 --> 0:12:51.760 you know, to a hospital that was miles away. It 0:12:51.800 --> 0:12:56.080 took money, gas, it just it and then depending on 0:12:56.120 --> 0:12:59.040 the insurance issues, sometimes we had to go an hour 0:12:59.120 --> 0:13:02.200 and a half away, two hours away for it to 0:13:02.360 --> 0:13:03.280 never worked. 0:13:04.520 --> 0:13:08.040 I'm sure that there's a huge need for more research, 0:13:08.200 --> 0:13:12.360 particularly within skin of color and how it reacts to 0:13:12.400 --> 0:13:13.479 different conditions. 0:13:14.000 --> 0:13:19.959 For many, many years, dermatology has been focused on white 0:13:19.960 --> 0:13:25.480 skin and disease states in Caucasian individuals. The other issue 0:13:26.120 --> 0:13:31.240 is the symptoms that bother people with different skin types 0:13:31.840 --> 0:13:33.320 are totally different. 0:13:34.080 --> 0:13:38.720 And were there ever any lulls? Were you always having 0:13:38.800 --> 0:13:40.360 some kind of flare up or another. 0:13:41.360 --> 0:13:47.880 I was always flaired from seven years old up until 0:13:47.880 --> 0:13:49.040 about twenty seven. 0:13:49.200 --> 0:13:51.679 I was ninety percent covered with the rises. 0:13:52.120 --> 0:13:55.400 Oh my lord, what did that do to you? Emotionally? 0:13:55.520 --> 0:13:56.840 Did it isolate you? 0:13:58.920 --> 0:14:02.800 It always made made me feel like I wasn't good enough. 0:14:05.720 --> 0:14:10.280 Sometimes I think it had an impact on me being 0:14:10.559 --> 0:14:13.800 my true and full self, because it's like, yeah, I 0:14:13.800 --> 0:14:16.520 would love to play sports, but I don't want to 0:14:16.520 --> 0:14:20.040 wear the uniforms. Yeah I would love to be a 0:14:20.160 --> 0:14:23.920 part of this school pageant, but I don't want to 0:14:23.920 --> 0:14:27.960 have to wear the gowns or the swimsuit that goes 0:14:28.040 --> 0:14:31.320 with it in front of all of my peers. So 0:14:31.560 --> 0:14:36.280 it definitely impacted how I viewed myself, my self, value, 0:14:36.400 --> 0:14:40.640 my self, love, Sometimes I felt like nobody else would 0:14:41.040 --> 0:14:44.480 love me. Sometimes I felt like a burden. 0:14:45.360 --> 0:14:49.720 Yeah, did you feel at times like it was a curse. 0:14:50.840 --> 0:14:54.120 There were definitely times where I felt like I was cursed, 0:14:55.480 --> 0:15:01.240 where I would ask what did I do to deserve this? 0:15:03.000 --> 0:15:06.080 You feel out of control because it's like, this is 0:15:06.120 --> 0:15:12.840 my body, why is it doing this to be I 0:15:13.000 --> 0:15:17.320 just gave up on finding treatment because I said, you 0:15:17.320 --> 0:15:19.360 know what, I'm just going to be like this for 0:15:19.400 --> 0:15:20.440 the rest of my life. 0:15:20.520 --> 0:15:23.240 So I just got to get used to it. 0:15:25.200 --> 0:15:29.320 Having treated siiasis for nearly forty years, doctor Weiss is 0:15:29.400 --> 0:15:33.400 sadly all too familiar with the emotional and mental toll 0:15:33.880 --> 0:15:35.640 of this very visible disease. 0:15:36.560 --> 0:15:42.800 It is a condition that is truly emotionally devastating for some, 0:15:43.440 --> 0:15:47.160 especially for those where the plaques of psoriasis are visible 0:15:47.200 --> 0:15:51.040 to other people and in a society that is so 0:15:51.320 --> 0:15:57.080 conscious of appearance. It is totally devastating to somebody and 0:15:57.800 --> 0:16:00.880 can really affect your inner action with the rest of 0:16:00.920 --> 0:16:06.080 the world, out of embarrassment, out of other people's misconceptions 0:16:06.120 --> 0:16:07.680 that you should be doing more. 0:16:08.280 --> 0:16:11.720 I remember I had got into an argument with some 0:16:11.920 --> 0:16:15.520 girls in my neighborhood and they started a rumor that 0:16:15.600 --> 0:16:20.080 my grandparents were burning me with cigarettes. At that age, 0:16:20.120 --> 0:16:22.800 I didn't know how to advocate for myself. But it's 0:16:22.960 --> 0:16:25.640 moments like that that I've had to deal with. 0:16:32.840 --> 0:16:36.360 It's impossible to fully comprehend the toll of such stress 0:16:36.360 --> 0:16:41.280 on a young child. But proving her unimaginable resilience, Alicia 0:16:41.480 --> 0:16:45.400 simply continued to live with her painful plaques. She would 0:16:45.440 --> 0:16:49.080 eventually find powerful acceptance along the way and a teller 0:16:49.160 --> 0:16:52.480 of support when she met Alan. He didn't change his 0:16:52.520 --> 0:16:55.480 perception of her or their relationship when he found out 0:16:55.520 --> 0:16:57.040 about her ongoing struggle. 0:16:58.080 --> 0:17:01.560 I remember when him and I first started dating. I 0:17:01.600 --> 0:17:05.240 did not want to show him my skin, and I'm like, 0:17:05.280 --> 0:17:09.000 how am I going to tell him that I have soriasis? 0:17:09.040 --> 0:17:13.560 And this is probably the first serious dating situation I 0:17:13.600 --> 0:17:16.520 had been in, And so I played a question game. 0:17:17.320 --> 0:17:19.320 I asked a question like, if there's something you would 0:17:19.359 --> 0:17:22.320 change about yourself, what would it be? You know? And 0:17:22.440 --> 0:17:25.960 he said his answer, and then I said poriasis. 0:17:26.040 --> 0:17:27.760 And then that's kind of how I brought it up 0:17:27.760 --> 0:17:28.440 to him. 0:17:28.800 --> 0:17:32.840 It was really a non factor to me. It meant 0:17:32.840 --> 0:17:34.679 a lot for her to just address it. 0:17:35.240 --> 0:17:38.520 And then I kind of saw how he responded, which, 0:17:38.840 --> 0:17:40.719 you know, he asked a couple more questions, but it 0:17:40.760 --> 0:17:43.120 was not a big deal to him at all, and 0:17:43.160 --> 0:17:47.720 so it was his reactions to me sharing little things 0:17:47.800 --> 0:17:50.480 like this that made me feel more comfortable. 0:17:51.240 --> 0:17:53.440 She had then kind of told me stories about other 0:17:53.480 --> 0:17:56.720 instances dealing with young people and whatnot at the time. 0:17:56.920 --> 0:18:00.920 And you know, people are weird. It's not her, it's 0:18:00.960 --> 0:18:04.440 them and their insecurities that show when they don't understand 0:18:04.440 --> 0:18:05.880 their care to ask questions. 0:18:06.320 --> 0:18:09.679 I remember watching a movie with him and I was like, Okay, 0:18:09.960 --> 0:18:12.760 I'm gonna wear a short sleeve shirt, like that was 0:18:12.800 --> 0:18:13.640 such a big deal. 0:18:14.119 --> 0:18:16.560 So I went in the bathroom. I was so nervous. 0:18:16.600 --> 0:18:18.640 I put my short sleeve shirt on and I came 0:18:18.680 --> 0:18:20.840 back in the room and you know, he kissed my 0:18:21.000 --> 0:18:27.199 arm and he was like, it's okay. 0:18:28.160 --> 0:18:32.120 Seven years old. Through college, looking back, you guys never 0:18:32.280 --> 0:18:37.240 stopped trying to find the next thing that could be 0:18:37.400 --> 0:18:41.199 the cure, could be the answer. How many things do 0:18:41.240 --> 0:18:42.159 you think you tried. 0:18:43.160 --> 0:18:48.120 I tried so many treatments. I mean, off the top 0:18:48.160 --> 0:18:53.160 of my head. From then until now, I've probably been 0:18:53.240 --> 0:19:04.080 on fifteen different treatments. Yeah, topical oral topical oral injections. 0:19:04.760 --> 0:19:08.119 Then you have you know, the phototherapy, the occlusion which 0:19:08.160 --> 0:19:12.840 doesn't go under those umbrellas, and even diet change. It's 0:19:12.880 --> 0:19:16.280 just like, why is my skin being so stubborn? And 0:19:16.320 --> 0:19:18.879 here you are talking to other people with ciasis and 0:19:18.920 --> 0:19:21.280 they're like, I've done this and I've done that and 0:19:21.359 --> 0:19:24.520 it's helped me, but you still haven't found something that 0:19:24.640 --> 0:19:25.000 helped you. 0:19:25.960 --> 0:19:29.520 Tell me the point where you hit rock bottom in 0:19:29.600 --> 0:19:32.600 terms of thinking that you could ever be cured. How 0:19:32.640 --> 0:19:34.160 old were you and what happened. 0:19:34.880 --> 0:19:38.560 I was twenty one, twenty two years old, and I 0:19:38.640 --> 0:19:43.560 had finally got my own health insurance, so I had 0:19:43.560 --> 0:19:45.679 a little bit more control than what I had in 0:19:45.720 --> 0:19:49.600 the past, and this doctor ended up putting me on 0:19:49.760 --> 0:19:54.119 my first injection. I was just so hopeful because my 0:19:54.200 --> 0:19:56.320 whole time in high school, I was like, if I 0:19:56.320 --> 0:19:58.399 can just get on this injection and get rid of 0:19:58.440 --> 0:20:01.439 my crisis, life will be great. And I was on 0:20:01.480 --> 0:20:05.240 that injection for about nine months and it did absolutely nothing, 0:20:05.680 --> 0:20:08.120 and at that point I was like, I'm over this. 0:20:08.680 --> 0:20:12.160 I remember breaking down in the doctor's office crying. 0:20:13.080 --> 0:20:17.560 Alicia was exhausted from relentlessly searching for any treatment that 0:20:17.600 --> 0:20:20.680 would help her alleviate her symptoms and bring her more 0:20:20.720 --> 0:20:24.119 comfort in her own skin. She'd gone from desperate for 0:20:24.240 --> 0:20:28.080 answers to discouraged and unsure if they would ever come. 0:20:29.040 --> 0:20:32.040 I stopped once to the doctor. I stopped trying to 0:20:32.400 --> 0:20:37.160 find treatments. Nothing was working. I'm going to have this 0:20:37.480 --> 0:20:40.520 condition for the rest of my life and there's nothing 0:20:41.000 --> 0:20:42.160 that I can do about it. 0:20:45.280 --> 0:20:49.240 We'll be right back with Symptomatic, a medical mystery podcast. 0:20:53.160 --> 0:20:56.200 In Trusto Sukuba tu voal Sartin tablets is the number 0:20:56.240 --> 0:20:59.600 one hard failure brand prescribed by cardiologists and has helped 0:20:59.640 --> 0:21:03.040 over one million people. It's a prescription medicine that treats 0:21:03.080 --> 0:21:06.000 adults with long lasting heart failure and works better when 0:21:06.000 --> 0:21:08.119 the heart cannot pump a normal amount of blood to 0:21:08.200 --> 0:21:08.639 the body. 0:21:09.080 --> 0:21:11.240 Don't take in Trusto if pregnant. It can cause harm 0:21:11.320 --> 0:21:13.679 or death to an unborn baby. Don't take in Trusto 0:21:13.760 --> 0:21:16.040 with an ACE inhibitor or Alice Karen, or if you've 0:21:16.040 --> 0:21:18.919 had angioedema with an ACE or ARB. Don't take with 0:21:19.000 --> 0:21:21.439 Alice Karen or within thirty six hours of taking an 0:21:21.440 --> 0:21:24.880 ACE inhibitor. The most serious side effects are angioedema, low 0:21:24.920 --> 0:21:28.960 blood pressure, kidney problems, or high blood potassium. Angioedema is 0:21:28.960 --> 0:21:31.440 swelling of your face, lips, tongue, and throat that may 0:21:31.480 --> 0:21:34.760 cause death. If it causes difficulty breathing, get emergency help. 0:21:35.160 --> 0:21:38.600 Ask your doctor about Intrusto. To learn more, visit support 0:21:38.640 --> 0:21:41.600 dot intrusto dot com or call eight three three four 0:21:41.640 --> 0:21:45.160 four six six six nine to nine. For pricing, visit 0:21:45.200 --> 0:21:48.240 in trusto dot com backslash cost. If you can't afford 0:21:48.280 --> 0:21:50.640 your medication, no vartists may be able to help. 0:21:52.359 --> 0:22:00.520 Now back to Symptomatic a medical mystery podcast and being 0:22:00.680 --> 0:22:05.120 diagnosed with severe plaquoriasis at just seven years old, Alicia 0:22:05.160 --> 0:22:09.240 tried every treatment available. Seeing it spread to nearly ninety 0:22:09.320 --> 0:22:12.080 percent of her body, She was desperate for a little 0:22:12.119 --> 0:22:16.240 reprieve from both the physical symptoms and more importantly, from 0:22:16.280 --> 0:22:19.240 the shame she felt when people would see and judge 0:22:19.240 --> 0:22:22.679 her condition. Now over twenty years into her journey to 0:22:22.680 --> 0:22:25.240 find a treatment, she was ready to give up on 0:22:25.320 --> 0:22:37.520 the idea of ever seeing her skin plaque free. Alisha, 0:22:38.080 --> 0:22:42.800 it must have been so demoralizing fighting a constant, persistent condition. 0:22:43.560 --> 0:22:46.560 Was it something that was just always in your thoughts? 0:22:47.560 --> 0:22:48.280 All the time. 0:22:48.520 --> 0:22:54.119 Even when I went shopping for clothes, I would literally 0:22:54.400 --> 0:22:58.080 have to navigate the way I put on my pants 0:22:58.680 --> 0:23:01.159 because I didn't want people well to look at the 0:23:01.240 --> 0:23:05.520 bottom of the dressing room and see my soriasis field legs. 0:23:05.880 --> 0:23:11.080 You always have to live with, Like, how can I 0:23:11.200 --> 0:23:16.080 prevent people from seeing this condition? You're always overthinking. 0:23:17.000 --> 0:23:20.400 Alicia had reached a point of almost accepting plaque soriasis 0:23:20.480 --> 0:23:23.240 as a major part of her life. She began going 0:23:23.320 --> 0:23:26.680 to soriasis community events in order to meet other people 0:23:26.720 --> 0:23:30.960 going through similar struggles and hope of finding support. Little 0:23:31.000 --> 0:23:34.320 did she realize that the longing for connection would lead 0:23:34.359 --> 0:23:38.359 her to doctor Jamie Weisman, whose Karen advocacy would start 0:23:38.400 --> 0:23:42.560 an entirely new chapter in Alicia's life. So you mentioned 0:23:42.560 --> 0:23:46.160 that you do know doctor Jamie Weisman. Can you tell 0:23:46.200 --> 0:23:49.080 me just a little bit about doctor Weisman, how your 0:23:49.119 --> 0:23:52.680 paths crossed, and how would you categorize her as a dermatologist. 0:23:53.040 --> 0:23:57.240 Doctor Weisman is one of the smartest, most talented dermatologists 0:23:57.240 --> 0:24:02.080 I know. I'm the adjunct faculty at Emory. She was 0:24:02.160 --> 0:24:05.840 a resident and she wanted to get into research, and 0:24:05.880 --> 0:24:12.040 she has been an amazing researcher and thought leader in 0:24:12.400 --> 0:24:16.359 helping develop the treatments we have now for soriasis, for 0:24:16.520 --> 0:24:21.399 a topic, dermatitis, and several other conditions. 0:24:22.640 --> 0:24:26.640 A doctor entered your life who gave you hope. How 0:24:26.640 --> 0:24:29.000 did you first cross paths with doctor Weisman? 0:24:29.880 --> 0:24:30.000 So? 0:24:30.280 --> 0:24:32.280 I was around twenty six years old. 0:24:32.640 --> 0:24:36.000 I have been a volunteer with the National Soiriasis Foundation 0:24:36.359 --> 0:24:39.720 since twenty eleven. I think around twenty three, twenty four 0:24:40.440 --> 0:24:44.040 and so there was an event in Atlanta, Georgia, a 0:24:44.200 --> 0:24:47.119 National Soiriasis event, and I went. I can't even remember 0:24:47.119 --> 0:24:50.000 what the event was about, but I do remember meeting 0:24:50.040 --> 0:24:53.640 doctor Wiseman. So we started having a conversation and she's like, yeah, 0:24:53.720 --> 0:24:56.600 I'm a doctor here in Atlanta. I showed her my 0:24:56.680 --> 0:24:59.479 skin and she was like, I can get you cleared up. 0:24:59.520 --> 0:25:01.320 She was like, come see me, I can take care 0:25:01.320 --> 0:25:01.560 of that. 0:25:02.440 --> 0:25:07.800 Wow, I'm so happy that you guys crossed paths. What 0:25:07.880 --> 0:25:10.280 did you think when she first told you I can 0:25:10.320 --> 0:25:11.240 take care of us? 0:25:12.760 --> 0:25:15.560 The hope started to come back because I had never 0:25:15.680 --> 0:25:18.719 met a doctor that was so confident, you know, Like 0:25:18.920 --> 0:25:21.879 she was so confident with saying she could clear my skin. 0:25:22.640 --> 0:25:25.760 And so I just remember saying, Okay, I'm married through 0:25:25.760 --> 0:25:27.280 the National Crisis Foundation. 0:25:27.440 --> 0:25:28.640 She does a lot of research. 0:25:29.640 --> 0:25:32.520