“Welcome to this episode of Psound Bytes™, a podcast series produced by the National Psoriasis Foundation, the nation’s leading organization for individuals living with psoriasis and psoriatic arthritis. In each episode someone who lives with psoriatic disease, a loved one or an expert will share insights with you on living well. If you like what you hear today, please subscribe to our podcast and join us every month at Psound Bytes for more insights on understanding, managing, and thriving with psoriasis and psoriatic arthritis.”
CORENE: My name is Corene Pettit and I’m here today to talk with members from MyPsoriasisTeam who the National Psoriasis Foundation joined as a partner in August to provide a community network of people with psoriasis and psoriatic arthritis. Joining us today is Eric Peacock, co-founder and CEO of MyPsoriasisTeam. Eric is passionate about empowering people facing psoriasis and believes it should be easy for them to connect and learn from others sharing the same condition - something the NPF believes as well. We’ll hear more from Eric in a few minutes about why he started MyPsoriasisTeam and his vision for the future. Also joining us today are three members of the MyPsoriasisTeam community, Vanessa, Laurinda and Paul. Each will have an opportunity to share their story and indicate how MyPsoriasisTeam supports them in their journey with psoriasis and psoriatic arthritis. You may also hear how they can help you too!
Welcome Eric, Vanessa, Laurinda and Paul, thank you for being on Psound Bytes today to share your story. So, let's first start with a question for Eric. Eric, why did you first choose to develop MyPsoriasisTeam and offer such a service for people with psoriasis? And since some of our listeners may not be familiar with MyPsoriasisTeam, can you please explain what it is and what it offers to the community members?
ERIC: Sure thing Corene. Thank you. So, first and foremost, we wanta make it easy for people with psoriasis to find the right people, support and information they need to best manage their condition. And we want to do it in a way that enables them to tap into all of the other people who are living this journey with them who have psoriasis, we want to make it easy for them to find those folks. So, what we have done is we've created a social network, just for people facing psoriasis or psoriatic arthritis.
It's called MyPsoriasisTeam. You can go to mypsoriasisteam.com. It's a free social network. Its password protected so google can't come crawl your profile and on MyPsoriasis team, you can find other people who have the same symptoms, maybe live in the same state or city. You can look by the therapies they're taking, and you can reach out to them and connect to them just like you would a friend on Facebook, except here everybody has psoriasis. And in addition to the social piece, you can find resources, and these might be resources that we partner with the National Psoriasis Foundation on, or we might interview dermatologists and rheumatologists who are experts in psoriatic disease and treatments. And we'll write content, we'll do video interviews with doctors and all of this is free and on MyPsoriasisTeam.
MyPsoriasisTeam, is actually one of 40 different social networks our company has created. I'm the co-founder of this company called MyHealthTeams and we now have social networks, including MyPsoriasisTeam and a total of 40 conditions. And a lot of those have overlap with psoriasis too. You have other conditions like spondylarthritis and rheumatoid arthritis. There are conditions such as depression and heart disease and diabetes. And also some rare conditions as well. So, you can find all of those on myhealthteams.com, where you can see all the different social networks we're in. But MyPsoriasisTeam is just for people with psoriasis and its password protected and monitored as well. We make sure no one's selling anything or taking your information. It's just for this community.
CORENE: That’s really cool. MyPsoriasisTeam sounds like such a great resource. And Eric, how many people are part of the MyPsoriasisTeam community network?
ERIC: I was just looking this morning and as of this morning there are 86,154 members who joined MyPsoriasisTeam. And most of those members are in the United States. We’re in 13 different English-speaking countries. We've got a big contingent in the UK, in Ireland, South Africa, Australia, and New Zealand and so on, but the majority of our members are in the United States.
CORENE: Wow! That's so great to hear such a large number of people are already connecting with MyPsoriasisTeam. So, Eric, what is the overall purpose for providing and continuing to grow such a community network?
ERIC: Well, again, it comes back to our mission. We're a mission-driven company, and we hope that by making it easier for people to find support information and people to help them better manage their condition, know life will be better for them, they'll have better health outcomes. I think one thing we know for sure is the healthcare system alone is not going to do it. You only are in front of the doctor, 15 minutes of every 6 months or whatever, maybe once a quarter, but the rest of your life involves so much more than what happens in that doctor's office. You need to figure out how do I cope with this? How do I live with this? What kind of clothes do I wear? How do I talk to my co-workers about it? How do I get support when my own family doesn't understand it. It's the living with the condition 365 days a year that is the bigger challenge and we want to make sure people understand you're not alone, you don't have to reinvent the wheel.
CORENE: Yeah, that's so true. And this is something NPF hopes to accomplish as well as offer an avenue where people who have psoriasis and psoriatic arthritis really feel empowered to live a healthy life. So, now let's hear from a few members of the MyPsoriasisTeam. Laurinda, Vanessa and Paul, who, despite their diversity all have psoriatic disease. So, let's begin with a little background information from each starting with Vanessa. So, Vanessa, how long have you been diagnosed with psoriasis and/or psoriatic arthritis. And when were you officially diagnosed with the disease?
VANESSA: Hi, this is Vanessa. I was diagnosed with psoriasis and psoriatic arthritis in 2000 and 11. I was diagnosed during the summer, which is just the worst because you really don't have a lot of clothing that can hide all these plaques and the scars, and it's really embarrassing. It holds you back, it hinders you with your social life. But being that you're in a rural area like myself in Georgia, and where I'm at is very, veryrural, there's a lot of stigma, a lot of misunderstanding and stereotyping. And so, when people are uneducated and they're misunderstanding, it's rough.
CORENE: And how about you Laurinda?
LAURINDA: Forty-five years ago, I was misdiagnosed with eczema and it was on my scalp only. Eight years ago it was diagnosed as psoriasis again on my scalp only, it worsened on my scalp. And two years ago, I was diagnosed with psoriatic arthritis.
CORENE: And what about you Paul?
PAUL: Ah 1995, I had spots of psoriasis. And the doctor said to me, it looks like psoriasis but without any confirmation that it was. In 1998, it was full blown at that time, went to a dermatologist and was confirmed that it was psoriasis in about 60% of my body plaque psoriasis.
CORENE: Well, thank you everyone so much for sharing. So, Eric, I understand MyPsoriasis Team conducted a survey among MyPsoriasis team members about living with psoriasis and or psoriatic arthritis. One of the questions the survey asked members is what were the top symptoms they experienced in the last 12 months? Can you please share the results of this survey question?
ERIC: So yeah, we did do some research on MyPsoriasis team. These are the experts, right? And we surveyed them and said, what were the symptoms you experienced in the past 12 months and the top five were red patches, itching, dry skin, flaking scalp, and small scaling spots. Now the highest one red patches was an 81% of the members who responded to that. And number five, the small scaling spots, it's still really prevalent that was 60 percent. So those top five range from 60 to 80 percent of the people. Now, the list of all the symptoms though, was about 25 symptoms long and if you go down, the next few ones were fatigue, nail issues (fingernail issues), cracked skin, and then depression, 49% of the members said I've experienced depression in the past 12 months and anxiety 43%.
And I can tell you looking across chronic conditions, not just psoriasis, but lupus, MS, diabetes and heart disease. Depression and anxiety run closely with a lot of these chronic conditions because of the things that Vanessa was talking about. It's hard, you just want to live your normal life and you just wanna be treated normally. But when the physical or painful challenges of psoriasis hold you back, that's one thing. And when the people around you don't give you the support or don't necessarily understand or aren't as educated as they could be about the topic, that's another thing that makes it challenging as well. So, that was for people with psoriasis and not surprisingly the symptoms for people with psoriatic arthritis are somewhat different than those with psoriasis.
CORENE: Hmm, those are really interesting results. So, Vanessa, Laurinda and Paul, would you like to share some of your common symptoms as well?
VANESSA: Well, as far as my psoriasis I've gotten it under control now, thanks to this new medicine that they put me on but before it was the red patches, they itch, they were inflamed, there's the cracked skin that bleeds. You actually would shed these plaques to a point if you get enough of them, no matter where you walk, they will fall like big flakes of dandruff. So, imagine that and you're walking, and people are seeing flakes drop. The pain of the psoriatic arthritis, oh goodness, your joints are aching. You're tired because you're tired at this peak from not just the mentality of it, but from fighting pain, your body is literally fighting itself. A lot of people might not mention it, but it's your fingers, it’s your toes they hurt, they ache. You’ll have problems in your hips, your knees. It’s not a simple disease. This is very complex, and it has many levels and it affects many people in so many different ways.
CORENE: And how about you Laurinda?
LAURINDA: Sure. My top symptoms would be number one, crippling fatigue then brain fog, joint pain, vision changes and hearing changes.
CORENE: And Paul, what were or are some of your most common symptoms in the last 12 months?
PAUL: In the last 12 months, other than being tired a lot, I don't have any real symptoms unless I get stressed and then minor parts of psoriasis rear its ugly head. I've been pretty well clear since 2007. So, I don't really have anything that bothers me, other than aging that's probably about the only thing.
CORENE: So, Laurinda, you suspected you had psoriasis way before you were diagnosed. What prompted you to seek medical care? What do you wish you knew when you were first diagnosed that you know now?
LAURINDA: Curiously I kind of stumbled on to psoriatic arthritis diagnosis and kind of stumbled onto psoriasis diagnosis by seeing a dermatologist and casually mentioning something regarding an itchy scalp and then casually mentioning sore hands over the course of seeing her and she urged me to see a rheumatologist. We have one rheumatologist in the state of Alaska. Right now, he is booked out into late 2023. So, I wasn't really seeking out medical care, awfully glad that I did make the appointments that I did.
As to what I wish I knew when I was diagnosed that I know now, I would actually have to say I wish I knew what psoriatic arthritis was and to some degree I still don't. It was after finally contacting the National Psoriasis Foundation website and joining MyPsoriasis Team that I came to have some understanding of what this disease is. And I can't really say what I wish I knew other than wish I had sort of gotten the straight answer from physicians regarding what this disease was and what I could expect.
CORENE: And now switching to quality of life because certainly psoriasis and psoriatic arthritis impact qualityof life as Vanessa has already alluded to. Eric, the same survey which was conducted prior to the COVID-19pandemic also asked members how their quality of life was impacted by their disease whether it’s psoriasis or psoriatic arthritis. Can you share the results of this survey question as well?
ERIC: Yes, certainly. So, we asked members a set of quality-of-life metrics and asked them how much their psoriasis or their psoriatic arthritis is interfering or impacting this. And what we found is in psoriasis 49% of people said that it interferes with their social life. 47% was the next one that said, made it difficult for them to be sexually active. 41% said it was hard to exercise and then about 32% said it was difficult to do chores and it negatively impacted their family life, or it disrupted their work or education.
It was slightly different for psoriatic arthritis, of course, psoriatic arthritis impacting the joints, number one 71% very high said it's really difficult to do everyday chores. 69% right there with it said it was really hard to exercise. 58% interfered with social life, 51% difficult to be sexually active, 51% disruption to the education or work and family. And so, what you see is a similar set of impacts on quality of life. Those with psoriatic arthritis tend to report that it's impacting them a little more severely than those with psoriasis alone, but both are really significant and the follow on to that is the emotional toll it can take.
So, when we look at that emotional toll and psoriasis, we asked people, how much have you experienced any of the following emotions from your psoriasis? 80% said they were embarrassed. They felt that, and strongly agree that their psoriasis embarrasses them. 68% said their psoriasis led them to feeling depression at one point or another. 67% said, they're anxious. 55% said they couldn't sleep or they, 50% felt isolated or alone. And in the world of psoriatic arthritis, the number one issue there on emotional toll is related to the sleep aspect. It's about three quarters of them have what they refer to as painsomnia, some challenge that makes it hard for them to sleep because they're stiff and hurting from psoriatic arthritis that's of course, when you don't get proper sleep that can really feed into depression and anxiety as well.
CORENE: And Vanessa you just heard the results of the survey about quality of life. Do you have anything you would like to add about how psoriasis and psoriatic arthritis impact your day-to-day activities, work and social life?
VANESSA: Yes, I did the survey myself and Eric is right the majority, it was the red plaques of scales, it’s the itching is just very uncomfortable and very disheartening to have a disease like this. Anxiety, depression, oh my goodness. If you're not supported, and you don't have someone that understands, which a lot of people don't have that, it will overwhelm you emotionally. And it will get you with depression and anxiety very quick. It’s like some days, even though I don't have the plaques, I don't have the itching and all those symptoms, I do have problems with my arthritis. It kicks in and it's like, oh no, and you have to think positive all the time.
If you do any comparison, it needs to be comparing yourself to where you are now to where you started. You really need something that can just totally eradicate all of the plaques and the physical of it, because that is what is eye-catching. And that is what hits the most cause people, they see this, they see this on your face, on your arms or your hands they don't understand, they think that this this is catchy, this is contagious, afraid of it, they don't want to sit by you. So, because of the stigma and stuff is really, really difficult, especially when you're in public and I just thank God that I found an awesome medical team, also medicine and MyPsoriasisTeam. Thank God for it and I thank Eric so much for starting this, goodness, I thank him so much.
ERIC: And Vanessa, thank you so much. It's not just me, who's doing this, but having people like you on MyPsoriasisTeam, that's what makes it great, caring, wonderful people, sharing their own experience and we really appreciate that. The positive attitude you take towards this after all you have gone through with that, that's just so inspiring. We've heard a lot of these stories, we see members sharing stories like this, where it took them a long time to get diagnosed properly or to find the right kind of doctor to treat them. And it's just so important to find a dermatologist who really understands psoriasis and can listen to you and your needs too.
CORENE: Thank you Eric. Finding the right dermatologist is truly critical to improving psoriasis. So, we’ve heard how psoriasis and psoriatic arthritis has impacted Vanessa’s quality of life. Laurinda and Paul, how has your quality of life been impacted by psoriatic disease?
LAURINDA: I have to say that currently my quality of life is severely impacted, I have crippling fatigue, well, you have to combine that with the pandemic. So, I suppose that makes for everybody. I'm in the process of finding what medication is going to mitigate as many symptoms as it can. I'm fairly early in my diagnosis. Secondly, brain fog where I forget what I'm talking about. Prior to having the onset of the symptoms of psoriatic arthritis I taught swimming lessons for years to the little ones. And if I had to face going to a swimming pool and changing and getting in the water and lifting the little guys, I wouldn't be able to do it. So, I would have to say that my quality of life has changed 360 degrees.
CORENE: And Paul, how about you?
PAUL: My first quality of life concern now it's not really an issue, but quality of life when I was in full blown psoriasis was very, I don't know how you, could say how you felt about it. In summertime, I never wore short sleeve shirts or shorts or pants and that type of stuff. During that time, I had a trip to California for 25 days with my son and his wife and in California in 80-degree temperature and have to wear long pants and long shirts is kind of rough, mentally it's bad. And thankfully, having found a dermatologist that really, helped meout and got me to where I am now. My quality of life is really very good other than still the tiredness, but that's going to be with me forever, I think. As far as the arms and body is concerned it's not bad, the legs are still pretty marked up, but it probably never will be better.
CORENE: So, Paul, it sounds like you feel you have a handle on how to manage your psoriasis now. What treatments have you’ve tried over the years?
PAUL: Yes, over the years from the time of full diagnosis, which was 1998 the dermatologist I worked withhad me on every known medicine. So, they put me on cortisone and that didn't do much. Cyclosporine, methotrexate, UV lights. I had Dovonex creams, the tar creams, all those different things. And I even had a special cream made in Africa from bananas. And I had the druggist order it for me didn't do any good. But during these times on these drugs, I was constantly going for blood tests every two weeks to try to control the effect of that on my liver and my kidneys. So, it took approximately six months for each drug.
The UV treatment, which started off at 10 seconds in a UV bed and we got it up to about 12 but without any effect whatsoever on the psoriasis itself. So, those are the drugs I went through before almost givin’ up on it. And then she transferred me over to another doctor who was a specialist in psoriasis - a dermatologist and that's when we really got serious with trying different drugs. I was a test patient in three drugs that were not yet released to the market. The first two did very little, the third one worked wonderfully. But it had to wait for approval so, that was like another two years later. So, that's where I got to be where I'm at today.
CORENE: And Vanessa, you mentioned how psoriatic arthritis impacts your quality of life. What would you say to others who also live with psoriatic arthritis?
VANESSA: It impacts you to where it slows you down especially with swollen joints and they're aching andsometimes it will cause the psoriasis itself to flare back up. So, you'll get a new lesion that had been gone, or you'll get pitting in the nails again. It impacts you a lot, And I would tell anyone, it is a lot of times challenging. You have to be proactive with your own health, help the doctors help you. I tell anyone do not listen to people that are uneducated, you know what you're going through. Talk to people, get with people like on MyPsoriasisTeam, you get with people like on that forum, on that platform and you talk with these people, you’ll get a lot of answers, you get a lot of inspiration, a lot of health tips, that really do help. You'll get a comradery, it's like a family unit.
And I'll tell anyone, this is one of the best places to go to, especially when you are feeling down, especially when you're confused. Make sure you get a doctor that will listen and will pay attention and is detailed. Don't be afraid to ask questions, don't be afraid or embarrassed to tell them, problems that you're having, like inverse psoriasis. You have to get with people, a doctor and build up your own support team And so, like I say it’s a lot of things that you can do as far as physically, mentally, emotionally, socially, you just got to be proactive, and you have to make an effort to help yourself.
CORENE: And Eric and Vanessa, what do you feel are successful components to managing psoriasis and psoriatic arthritis?
ERIC: The five themes that we hear over and over and over are number one, educate yourself like figure out what are the triggers of these symptoms? What are the potential medications out there? What are the best exercises all that kind of stuff. And then Vanessa said it get a doctor who listens and if you don't have a doctor who listens it's time to find another doctor. Self-care is so important. And a key part of that is knowing you're not alone, don't reinvent the wheel, don't do this alone, find support, whether it's on MyPsoriasisTeam or any other type of outreach you can get it's just so important that somebody will be on that journey.
VANESSA: Um, I'm gonna say this, it takes a lot to figure out which direction to go. There's a lot of factors that do affect psoriasis, your climate, your diet, day to day living, the stress level of it, it's all about how you handle it and how you handle your triggers. I have a very stressful job with being on the farm and mortician. So, I have to mentally prepare myself and mentally give myself a pep talk every day. And I will tell anyone be proactive and be prolific with your care. You know yourself better than anyone else. So, I will tell anyone just make sure that get to the right doctor, one that you're comfortable with, one that you're happy with, one that you can ask questions and not feel insecure when you do. So, make sure to surround yourself with as much supportive things as you can so you can enable yourself to get better.
CORENE: And for all three of our community members, how important is having a reliable support system who can help you on your path to managing your disease?
LAURINDA: I think it's tremendously important to have a support team. I think people who don't have skin psoriasis don't really understand what it is. In fact, um the TV show, the Netflix series, Ozark used to theme psoriasis where one of the children was trying to raise money for another student who has psoriasis. And a comment was made, “Isn't it just a rash”? And I think a lot of people think of psoriasis that way unless they can see it on somebody, or they have it themselves.
As far as psoriatic arthritis goes, I believe my experience has been people who haven't experienced themselves just get tired of hearing it, they hear “Oh, my hip hurts, oh my hands hurt, I’m tired and really very common experience that I've had is “oh, just shake it off, toughen up”. People on MyPsoriasisTeam, they're not like that, they get it, they have it and it's been life saving for me to have interacted with these people. You don't have to speak, or they understand the language and you don't have to explain in detail and shout what I'm going through and to know that I'm not alone. It just opened my heart to know that there are other people in the world who understand and are experiencing some of the same thing.
VANESSA: And this is so true, you are so correct. Support is everything especially when you feel you have nothing. So, imagine having a day where your psoriatic arthritis is acting up, the plaques you're gettin new ones, you just had a death in the family, then you have a flat, you are late for a meeting, a very important meeting that could determine you getting a raise, because you were late you don't get the raise. If you have one person that can give you encouragement and inspiration and some kind of hope then you feel like you've gained everything. This is right. Ultimately giving is what we really really need especially now.
PAUL: I just wish that I had been on MyPsoriasis Team, when I was really in trouble. I've been on it for I don't know what how many years now quite a few. There was really nobody that I knew that I could talk to about it until I came across a dermatologist that specialized in psoriasis. The team itself I've joined since I've had clearing and it's wonderful to get on and just read the stories of people who are where I used to be and hopefully, I can support their feelings and help give them advice of where I went, what I did, how long it took me 10 years to get clear. So, during that period of time I learned a lot about it, read a lot about it, studied a lot about it. But the psoriasis team itself that we're on now is wonderful to talk to people that understand exactly where you've been and would like to be where you are.
CORENE: And what does MyPsoriasis Team mean to each of you? Paul you’ve already indicated to some degree what MyPsoriasisTeam means to you. What do you feel are the benefits of being part of such a community network?
PAUL: When I joined the Psoriasis Team many years ago, just to find out there's other people in the world that have the same problems, the same skin problems. Some more severe than others, some fairly mild, some called in for their children. But it was the only support team I had because I don't know anybody else here locally that has psoriasis. So, other than my family there was really nobody that understood for the period of time that I went through it which was a long time. And to go on the support team that is on here and see people from all over the world have the same issues that I have and know that you're really not alone. There's a lot of people there and you get a great lift from that so, it does help. And it is a stress reduction at the same time. I love going on it, and I love being able to help if I can.
CORENE: And Laurinda, what does MyPsoriasis Team mean to you?
LAURINDA: I get tremendous help from the team. I've never been involved in an online group. I was a little tentative at first, but I'll tell you, I felt so less alone when I heard and read the stories of other people that sounded very similar to symptoms that I had had for years. I don't know if earlier I had mentioned that I've had misdiagnosed psoriasis for nearly 50 years. And eight years ago, it was diagnosed as psoriasis. And then two years ago, psoriatic arthritis so, many, many of symptoms that I've had over the years, make sense under the umbrella of PSA. And only because of the stories that I read and the people that I interacted with on the team. So, it has been a godsend for me.
CORENE: Vanessa, do you have any comments you’d like to add?
VANESSA: As far as what this platform has done for me, it has done a tremendous up lifting inspiration. If I look on there because there's certain people whose story catches you, because you're so similar, with what you’ve what been through. And you just want to check on them to make sure they're okay. This is a platform and a community of its own that I can fully commit myself to. I call people like Mr. Paul veterans, because he's been on here for many years. And if I needed a guide on what to do, I would go to him and ask, knowing that I won't get bullied, I won't get talked about, talked down to, but I would get a righteous and an honest response. That is gold. Why wouldn't you want to be part of that? So, that's what this platform is. It has so much greatness and so much good in it that it helps you bring out your best and it helps you try to do your best. So, I can see myself committed to this for years and years.
CORENE: Well, that's a great segue into our next question, Eric, how important is it to give an opportunity to hear the voice of people who have psoriatic disease and what is the value of partnering with the National Psoriasis Foundation?
ERIC: The National Psoriasis Foundation is just an amazing resource and we're so thankful to be partnered with you all. The National Psoriasis Foundation has proven itself always being is, is a listener to patients and what real patient's needs are and their champion and the voice for patients. I think the National Psoriasis Foundation has always been on the forefront of really understanding what it's like to live with the condition, bring that forward and make sure the patient voice is heard.
And I think with the relationship with us at MyPsoriasisTeam, you've said that it's important that those people hear each other and support each other and can be there. So, the National Psoriasis Foundation is everywhere, they've got a fabulous website with all sorts of great resources. They have their own Facebook communities and yet they're embracing us too at MyPsoriasisTeam and saying that's a great social network people should know about that as well.
And what I love about it is it's just very symbiotic. We regularly tell our members about these great resources at the National Psoriasis Foundation. And the National Psoriasis Foundation regularly tells people about us and then of course, people start having conversations about these things on the social network. So, that's wonderful and in terms of just giving voices to patients it's just that the time has long passed due where patient priorities drive the way healthcare systems work in the way medicines are developed for them and I think both of these platforms - MyPsoriasisTeam and the National Psoriasis Foundation offer a great way to do that.
CORENE: And Eric, how can someone join MyPsoriasisTeam if they want to be part of this amazing community network?
ERIC: Well, it's pretty simple. You just go to my psoriasis team.com and you can join there. You have to either be somebody an adult who's diagnosed with psoriasis or psoriatic arthritis or the parent of an individual with it or the spouse of an individual with it. So, it's not for everybody and their uncle. It is a focused community for people facing psoriasis. It is free and it is password protected so, when you join, we don't share your information outside with anybody. But when you're inside and you join, what you share there it can be seen by the other members. And we monitor it, we make sure there's nobody on there being mean or selling things or anything like that and make sure it's just a safe and constructive environment.
CORENE: Yeah, from the comments that Vanessa, Laurinda, and Paul made earlier and what you’ve just said Eric, MyPsoriasisTeam sounds like a great place to be and offers a lot of needed support for people who have psoriatic disease. Thank you Eric, Vanessa, Paul and Laurinda for being here today. You’ve shared such great information about MyPsoriasisTeam. Do any of you have final comments you’d like to share with our listeners?
PAUL: What is really important on the Psoriasis Team is people go on and tell their stories and their stories are really, really important not only for them to be able to tell, but for the people that do read them, because it gives you a whole lot of information. Everybody gets treated differently, the same drug doesn't work for everybody but there's a myriad of drugs out there that will help people and that's really what they got to find out, it allows them to question their dermatologist as to what this drug is or what that drug is. What the cause of it is. And that is very, very important. That's why the MyPsoriasisTeam, is A one in the business to allow people to contact and that's the biggest thing in the whole psoriasis outfit.
LAURINDA: I think it's important to know how to find MyPsoriasis team. I stumbled upon it, my dermatologist on a little piece of scrap paper scribbled down in her handwriting that the National Psoriasis Foundation may have information that would be of help and it was probably years before I went and looked it up. And then one day, I looked in the right place, MyPsoriasis Team, signed up for it and it was like the wizard of oz and Dorothy opens the door to Munchkin land and it's in living color. So, I would love to see MyPsoriasisTeam maybe more available so, that we don't have to be scratching the corners to try to find help.
VANESSA: My final message would be I hope that one day there's a cure for this and I don't know how far away or how close to one we are but I also hope that one day people that cannot afford the medications, even the traveling, the transportation because I have to travel a long ways to my dermatologist to take care of my skin, the problems of the psoriatic arthritis and the psoriasis itself and a lot of people don't realize that these medicines are very expensive biologics, the creams, the pills, you and a lot of people also go through so much to find what's right for them or what will alleviate a lot of the plaques, the itching, the pain.
I want people to also know that you have psoriasis it doesn't have to have you. What you have to do is put your mind over matter. A lot of times, it's easier said than done but you have to do this, you have to get in your head ‘Okay look, I'm not the only person out there with this problem’. And it’s difficult, but find a support team, like MyPsoriasis Team, awesome. This is the best thing since cornbread. So, I'll advise anyone please join me. I'm just thankful that I came across this platform, I'm hoping that others will do this as well. And to have people like Paul and Miss Laurinda, they’ve been dealing with this for years, So, to listen to these two who've been through all of this is mind blowing and it's very inspirational. So, I tell people help others help you, lookin for it, it's out there you just got to find it, you just got to research it and just put your best foot forward. That's the best thing I could tell someone.
ERIC: This is Eric, what Paul, and Laurinda and Vanessa have shown us is that everyone’s got a slightly different journey when they’re going through psoriasis or psoriatic arthritis. It’s definitely not a one size fits all, but you are not alone, you don’t have to go through this by yourself. You don’t have to reinvent the wheel. You can get good medically approved information and support, and basically be your own best advocate the better things are for you on this journey, so I just hope that people will feel safe and welcome to join MyPsoriasisTeam, it’s free, its password protected, and it helps you make sure that you engaged with all these other folks to get the help you need.
CORENE: Thank you all so much for your comments and for providing such a great overview of the benefits MyPsoriasis Team offers our listeners. Reach out to MyPsoriasis Team to discover what an invaluable resource it is for you, our listener. As a reminder to join and for more information visit mypsoriasisteam.com. And finally thank you to the following sponsors who provided support on behalf of the program through unrestricted educational grants: Amgen, Bristol Myers Squibb, Pfizer and UCB.
We hope you enjoyed this episode of Psound Bytes for people with psoriasis and psoriatic arthritis. If you or someone you love has ever struggled with psoriatic disease, our hope is that through this series you’ll gain information to help you lead a healthier life and inspire you to look to the future. Please join us in a couple weeks for another inspiring podcast. You can find this or all future episodes of Psound Bytes on iTunes, Spotify, Google Play and the National Psoriasis Foundation web page. To learn more about this topic or others please visit psoriasis.org or contact us with your questions or comments by email at firstname.lastname@example.org.
This transcript has been created by a computer and edited by an NPF Volunteer.
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