Fostering the Patient Voice in Medicine | Sarah Kucharski

Living with rare disease, anyone will tell you that it's isolating because you're not just going to like bump into somebody on the elevator who shares your same diagnosis and it's not the kind of thing that there are sport group meetings held in the local church basement either and so is really about social media.


Sarah E. Kucharski is a patient advocate, speaker, writer, patient, communications and health care consultant

Sarah’s Story

I got  involved in patient advocacy because I am a rare disease patient and as a rare disease patient it is extremely important to be able to be actively engaged in care to take a certain responsibility for directing your care, because you’re yourself 24/7, 365 and that's a lot more time than the doctors will ever really get to spend with you. I was diagnosed with rare disease when I was 31 and it actually came about because I had done a lot of investigation into my own care. My background is as a journalist and so I'd read all the information that I could get my hands on, done the research, read the medical journals and actually written an email to a doctor at the Cleveland Clinic and said, I know that sounds kind of crazy, but I think that I have this rare disease. She wrote back and said, I think you're right.

My medical history had been really complicated, for years as a teen preteen, I'd actually presented with gastrointestinal trouble and nobody ever thought GI problems, vascular cause. It took a very long time for us to even get to the point that anyone started looking down that path. I went through having triple bypass surgery that ultimately failed. I lost my left kidney. I had a stroke, four brain aneurysms, three of which were coiled and a gastric rupture. After having that in a period of about five to six years, that's when I said he didn't. Nobody has just this bad luck, like there's got to be something more here. There's got to be something overarching and that's when I really got serious about doing my research and reach the diagnosis.

Isolation & Rare Disease

Living with rare disease, anyone will tell you that it's isolating because you're not just going to like bump into somebody on the elevator who shares your same diagnosis and it's not the kind of thing that there are sport group meetings held in the local church basement either and so is really about social media. That without the Internet, without twitter and Facebook, or even registries and individual hospital systems, their forum board, etc.,, it would be so incredibly hard to find a patient community. We can maybe be a little less particular in that maybe a person doesn't have to share exactly our same diagnosis, but they are a rare disease patient too. So they understand some of the struggles of achieving diagnosis, of routine care, of having anybody else who says, you know, yes, me too, I know what that's like.

Health & Patient Empowerment

As far as my health, knock on wood, everything's actually pretty good right now. Things have been quiet, from just a pure health standpoint, I'm doing great. Thinking about the patient experience and its role in health care for rare disease patients, there's a saying of when you hear hoofbeats look for horses, but we need providers who are willing to entertain the notion that sometimes hoofbeats actually are zebras.

We need people who are willing to think outside the box and be curious. Curiosity, I think is one of the most valuable components of any person is what pursues you to find answers, to explore things, to get new knowledge about anything and so I would encourage that risk taking, that curiosity and if we can use that in a way that advances care, that is not reckless. I think perhaps sometimes people think of curiosity and in rare disease diagnosis as trying to be house MD and it's not necessarily about that. It's about really just asking the questions to explore the possibilities.

Rare Disease & Stigma

Having a rare disease inherently. I think people they hear that and they pause for a moment of it may very well be based in fear of what is this thing? Can it impact me? Is it transferable? Anything like that in rare diseases are really so much more common than people realize. The last statistics that I read about rare diseases was that combined, they affect more than like aids and cancer combined because there are 7,000 known rare diseases. It just means that we're a very fragmented population, but chances are, you actually probably know someone with a rare disease and there are diseases that you may have heard of that get a little bit more name recognition that it's not necessarily as rare as you may think, in a way. It's not something to be afraid of because actually research into rare diseases has unlocked information about many more common diseases that when you look at research studies and research arms that pursuing the mechanisms of these rare diseases, we can find out so much more about things that are more comments such as alzheimer's or diabetes.

Outlook on the Healthcare Environment

My overall outlook on the healthcare environment has changed over the past six years or so. In a way I feel like I used to be more hopeful because I was also more naive. Seeing how long change takes is maddening and depressing in a way. We're still trying so hard to push some of the same needles that we were trying to push years ago. I'm not someone who's been at this for 20, 30 years and I'm frustrated. There have been things that have happened politically that have pushed us backwards and I worry that for people like me, we may lose some of the protections that we’ve gained. I try very hard to maintain a sense of optimism and actually one of the guys here at Planetree, his name is Alan Manning and he's actually, I think VP of Planetree. He gave a wonderful lesson on hope as a speaker here a few years ago that he said; hope can change, hope isn't a stagnant thing. I had always worried that the people who felt like they hoped for change weren't maybe doing enough to impact it, but we can hope for different things in that whole change along the pathway that it grows and it becomes something that expands based on what we've learned. That's the first definition of hope that I've ever really liked. It makes me feel like it does respond to the changes around us.

Advice to All

I want to encourage people to stay at it, to keep trying to make a difference, to maybe know when they get into it that the needle move slowly or at least know that they're not alone in feeling like the needle is moving so slowly. That may be a different problem that we have to solve. We talk about physician burnout, we talk about patient burnout. How can we address burnout from trying to make things better, from trying to find solutions from getting ourselves to a point that we're not going to give up.

Planetree’s Impact

The Planetree organization and this conference is something that I learned about I think three, maybe four years ago and I was utterly shocked that I had not heard about them sooner because this was a group that I could say was actually doing everything right. That how they're approaching care, how they're focusing on patient centered care, but from a very provider focused angle is really interesting. It's really encouraging and it's something that I as a patient support because we often talk about patient experience as being something that’s so patient focused without talking about the people who are actually supposed to provide the care, and caring for those people. Making their environment, their jobs, their reward system, something that is conducive to a healthy care environment, that's only going to benefit all of us. I hope that more people get involved with Planetree. I hope that more systems see opportunities for patient engagement that aren't solely patient focused, but that we have opportunities to contribute to measures that will improve provider staff, employee care, so that they can do a great job of caring for us.


Person Centered Care at Planetree Inc, Susan B. Frampton, PhD

“One of the things that all people have the ability to do is to listen, to be a compassionate listener and to approach other human beings with that openness to whatever their experience is” S Frampton, PhD.


Susan Frampton, PhD is the president of Planetree International.

Planetree is both a philosophy of care, of patient centered care, of care that engages patients and families as a part of their care team. Planetree is also an organization that has advocated for the rights for patients and families to be more actively engaged in their own care for 40 years.

Technology & Humanism in Medicine

In terms of the future of patient centered care and Planetree’s role in that, I think that it will really be a challenge for us to look at the intersection of technology and the human touch and to not lose that human side of the care equation in this rush towards implementing more and more sophisticated technology.

There's some wonderful benefits that we have in store in terms of communications technology, in terms of artificial intelligence, but always we have to remember that at the center of the equation is a vulnerable human beings with human needs and that we have to make sure that we find a way to bridge technology and those human needs.

Healthcare Professionals Role in Person Centered Care

I think that the role of healthcare workers, healthcare professionals, advocates, in person centered care in the future as well as currently is absolutely essential. So, when we talk about patient and family engagement, we also are addressing staff engagement because the people that deliver that care, they're also at the center of the equation.

That's why we've really moved from talking about patient centered care to person centered care because they're also a part of the people that we have to make sure are supported, are engaged and involved so that they can give their very best to the patients. But in order to do that, we have to make sure that they're getting the support and the training that they need to do the very best that they can.

Empathy & Care Delivery

One of the things that all people have the ability to do is to listen and to be a compassionate listener. To approach other human beings with that openness to whatever their experience is. To understand that to try to meet other people where they're at and not to make judgments about things. To really try to be a little broader in the way that we approach other people so that again, we're trying to put ourselves in their shoes to understand what their experience, what their reality is.

I mean, that can be so diverse. It is a challenge because all of us have our own biases, whether we acknowledge them or not. We come from our own set of experiences and our own background and our own, training or what have you. But I think when we come together, particularly in healthcare, we have to challenge ourselves to think more broadly, to be more open and to be more compassionate listeners to the human beings that we're trying to support.

Patient Empowerment Initatives

So #careboss in many ways encapsulates what the whole philosophy of person centered care is, which is each of us has an opportunity to take more control of our own healthcare, to be advocates for ourselves, for our families, for our communities, and Careboss is a way of kind of energizing people to understand, you don't have to be a victim. You don't have to be the person who sits passively, that we do have power.

We have expertise about our own lived experience, about our own bodies, our own needs, and so it's really a movement to try to energize people to kind of take that power back to be the boss of their own care. To the extent that they're able to, where they're comfortable to. And so we're hoping that people will use that hashtag (#careboss) to share their experiences. To maybe give us their thoughts and perspectives about what it means to be in a space of more accountability for your own life, your own self, and what role you want to have in your own healthcare.


Empathy in healthcare with Kelsey Crowe, PhD | Founder of Help Each Other Out


"Everything about a medical setting from it's unequal power relations, the racial makeup of who the doctors are, the gender makeup, everything about it suggests that there will be a lack of empathy for your very common patient" Kelsey Crowe, PhD.


Kelsey Crowe, PhD is the Founder of Help Each Other Out, Co-author of There Is No Good Card for This

 

Kelsey Crowe, PhD & Help Each Other Out

I'm Kelsey Crowe and I am the founder of the social venture, Help Each Other Out and I also teach social work. Help Each Other Out is about giving people tools for human connection when it's really difficult to do. Often it's really difficult to do when someone is going through something really difficult that you don't understand. So, if you know someone going through illness, loss, miscarriage, infertility or depression you may not feel that you can fully relate to that experience and back away. Help Each Other Out is about making it easier to lean into somebody's difficult experience and not be afraid to actually find how much joy it gives you to have connection on deeper levels. It actually gives you more energy rather than less. I started this work because I was somebody who shied away from people in a difficult time.

I was often afraid that I would say or do something to make the situation worse. I reached kind of a dead end with that behavior when my friend was diagnosed with breast cancer and I didn't reach out and I could no longer console myself, but that was because I was doing her a favor. I realized it was because I was simply afraid. I had experiences in my own life growing up that was very isolating and filled with a lot of pain and suffering and others didn't reach out to me. I recognized that I was inflicting the same pain of isolation that had been afflicted upon me, I don't think it's because people don't care. I think, in fact, many of us do care. I think we just often don't feel equipped to do something with that care that can support somebody else.

Connecting Empathy tools to the healthcare environment

It's funny, when I first did this work, I didn't expect it to infiltrate the medical community at all. I really was looking for your average person that's looking for a yoga class or an empathy class, and really wanting to take it out of the hands of professionals and put these kinds of skills into everyday skills like we have around how to eat at the dinner table. Just basic kind of regular etiquette practice. I started getting more calls from medical providers about doing my empathy bootcamps with them and I recognize that what is so valuable in that community are two things;

  1. The very simple practical tips I give around communication that doesn't dismiss somebody else's experience that honors somebody else's experience, makes them feel respected, but doesn't have to add a whole lot of time to your encounter that many, as you know, medical professionals do not have. So how can we help people feel seen in their condition? By just the way we have presence with them, and not necessarily give them one more hour of our usual to do's business that we do by the computer. I guess this kind of practical approaches has appealed to medical providers.

  2. Also, I talk a lot about how, what we can be, who we are and what we can do. How to help us see that as being so full and complete, and ultimately enough. I think it's in our striving to be perfect, that we wind up layering on a level of stress to connection that makes us resistant. So my goal in the medical community is that doctors feel empowered as human beings to be who they are and to offer their best self, but to not expect to be everybody to all things. Because, when we go that route of trying to please everybody all the time that's when we get to the burnout and fatigue, the resentment and the cynicism. So that is my goal, to help medical professionals really recognize who they are as natural empaths, identify ways to be that full self and to feel like it's a joyous thing.

Jeopardizing Empathy in the provider patient relationship

I think we jeopardize it when we blame patients for their situation, which on the one hand can easily happen because we all have our traits that make us blameworthy. That can bring us into the hospital. I think we also need to see our patients for who they are, which are people with families or people without family, people with failed dreams and with dreams. People who bring a whole host of fears, denial, worry, and to not wall ourselves off from those because they get in the way of doing the medical work and in fact somehow figure out how to work with these aspects of human beings. That is part of the work, I think we'll all be so much better at it.

Social Determinants of Health & Empathy

All Studies, on empathy have shown that people in power have less empathy for people not in power. That people who are more powerless tend to have more empathy for others because they've had to put themselves in the shoes of somebody else to sort of navigate and understand their treatment. Everything about a medical setting from it's unequal power relations, the racial makeup of who the doctors are, the gender makeup, everything about it suggests that there will be a lack of empathy for your very common patient. Even the research studies who's being studied are we studying different populations and genders for different impacts of drugs and on and on and treatment outcomes. So it's, it's inherently bias. And then also who comes into the system because of lack of access to preventive care.

Then the way that those patients are judged, "you've let this tooth decay this far. Why didn't you go for regular checkups? Do you not care about yourself ?". Lack of information that patients have about various medications and their side effects. Not everyone is easily going to turn to Google and look up web med, or have friends that they can talk to or to get referrals for the best practitioner. The networks that people move in and sort of the professionals within their social circle and family circle that they have access to. It's just so different. That really allows you to prepare for your calls and to field your providers. There's so much room for disparity, and it's a tremendous ask of doctors and nurses in there wanting counter to try to overcome that huge societal weight of disparities.

The Feel and look of empathy for the everyday patient

I think for a patient empathy feels like someone understanding your frustration form the minute you get into the door with how cold the reception area is. How uncomfortable the seats are, to how anxious you are about waiting and not understanding why you're there for two, three, or four hours. To getting into the doctor's office and not waiting in your gown for an hour, for shivering. To meeting your doctor and not have them immediately turned to their computer and start typing in notes. To having your doctor ask, how are you feeling about this today? And hearing your experience with what you're going through.

To then asking what do you already believe you know about this condition? And respecting the knowledge, what you believe to be knowledge that you bring to it, and to have open ended questions about any concerns that they have with coming home or with anyone in their community and genuinely wanting to know not just ticking it off of a form.And then the larger system in terms of its practice of sharing medical records and communication between medical providers that they try to facilitate a lot of communication around some basic data so that the patient doesn't have to keep repeating over and over again, some of their basic information, because it's really dehumanizing.

Deploying empathy towards vulnerable populations in the healthcare setting

So many vulnerable populations, let's say call them vulnerable at the same time, sometimes act the toughest and it's because they're afraid to be vulnerable. They don't want to be victimized, they don't want to be disrespected. So they may not share all of their stuff, all of their worries. They may not actually and often do not have a lot of trust in their medical team.

I think that doctors need to build rapport with their patient that's based on trust. And Trust always, always begins with an interest in who somebody else is. If you don't have that interest, then you're just another doctor who doesn't care about me. So you, you have your own stereotype as a medical professional to overcome. Even if it's, Oh, I noticed your hair is different today. Anything special going on? Any way to sort of acknowledge or shared humanity.

There's No Good Card For This

What inspired me to write the book; There Is No Good Card For This is getting the hands of as many people as possible, some basic tools and practices that help people connect to others. It was rooted in a firm belief that, we so much lack compassion as we lock confidence in how to be compassionate. So the book provides real guidelines for what empathy and compassion can look like and feel like. And also illustrate ways in which what we see as benign comments can actually seem very hurtful to somebody else. So it kind of illuminates what caring connection looks like. It doesn't try to tell somebody to be somebody who they aren't by any means. It just helps round off the rough edges a little and I'm really pleased that It's gotten into a few people's hands for sure and may it get into more.

Impacting Societal change through empathy

What I do is teach and help others teach each other some basic tips for having more effective communication and connection. My hope would be that people have the conversations that they want to have because they've learned these things. They don't want to have dead end conversations, where you don't get all the health data that you need to make your medical decisions. And you don't get all the feelings updates from your spouse or your family member that you need to be a good spouse, good parent, or good sibling. There are ways that we can practice talking to each other that bring out more and make our relationships really worth while. My hope would be that people learn these simple tools, and they have access to them, however is best for them whether it's in a book ,workshop or online. 

Empathy Legacy

I would like to see empathy education  in every classroom, the way that you see sex education. I'd like to see it in every wellness studio in the way you would see yoga. I'd like to see it as just part of adulting, that we take relational health based classes. That would be my legacy that, that happened. That somebody would just join that course as freely as they would join any other course. 


Brigette McKern | Patient Advocate | Double Lung Transplant Recipient

"I remember the day I was told in the doctor's office; obviously they tell you that you're at end stage cystic fibrosis, meaning without any treatment, you probably have a year to live and lung transplant doesn't cure it, but it can extend your life" Brigette Mckern.


Introducing Brigette Mckern and her Journey Living With Cystic Fibrosis

My name's Bridget McKern, I'm 36, I'm right now. I'm mostly a professional patient and I do work part time as well in a library. Right now I am just maintaining my health and I hope to travel more. That's my plan. When we look with cystic fibrosis CF, that a genetic disease that affects the lungs and the digestive system. It's a genetic disease and basically the lungs filled up too much mucus. They produce too much mucus so a bacteria and illnesses can live in there.
Usually you get lung illnesses progressively, it's hard to get rid of them. So you do things like nebulizers, like asthma patients would do to break up that mucus, but just over time it takes over your lungs and you also built up cysts in your lungs. Transplants is needed at some point. When I was four years old I came down with pneumonia, I ended up in the hospital and that's when they diagnosed me.
I had symptoms that I was showing, they tested me and found that I had it. I was a pretty healthy child, I wasn't in the hospital again until I was an adult and then it kind of started. My disease progressed, my lungs get worse. When I was 30 I was listed to receive a double lung transplant. I waited two years on the waiting list and then received my transplant and that was three and a half years ago. So now I'm just trying to maintain my health.

Growing Up With Chronic Illness

I knew I was different from my friends, but again, I didn't grow up with other people who had CF. For me, I was luckily a to be a normal kid. I went to birthday parties, sleepovers and I went to school. I had friends, I don't think I really thought I was too different. I knew I had to do medications and my friends, I don't know, I think it was in a way kind of cool for them. They were like, oh, what's your nebulizer machine? Or what do you do?
Actually that was nice. Nobody picked on me or anything. So it wasn't bad. I think as my disease progressed, it got harder and I kind of wanted that outreach to reach out to other people who lived with my illness to understand it better. I noticed a lot when I graduated college and when I went out to get a job and to work, I didn't really want people to know about my illness. I was worried it would prevent me from getting a job if they knew that I would have to take days off, I would possibly have to be in the hospital at times and I thought it would be a barrier.So when I was a kid, it wasn't something that was very visible unless they saw me take medications or something like that.

Invisible illness and Adulthood

As an adult and my disease progressed, I had a chronic cough and people especially working in an office, oh, are you sick, do you have a cold? I would just say, Oh yeah, allergies or you know, I didn't have anything contagious, but I knew it was pretty obvious that I had something wrong. I would miss days of work and things like that. But then sometimes I think it's easier when people can see it in a way that then they understood.
People tend to understand sickness, like when somebody has a visible cold or the flu, you know, and you, Oh, I'm so sorry. Um, and maybe if they can't see it, they think, oh, you know, you cancel these plans, you're flaky or you don't want to come to work. You're not a good worker. It's kind of that hard place of you want people to understand, but you don't because you don't know how it's going to jeopardize what they think of you or what that means to your professional life.

Reflecting On Receiving News of Needing Transplant

When I was listed for transplant, actually, it was a surprise to me that I needed transplant. You know, living with CFD you kind of know, oh, that could happen. When it did, it just seemed so foreign and I didn't have anybody to talk to who had been through it. I really used Facebook and social media to find other CF patients. Other patients who went through transplant and really seeing other people share their stories.
That's what made me want to share mine because I thought, okay, this person's story made a very big difference to me. If I could do that from one person who maybe was in my position and felt really lost and not sure what they were going to go through coming up and it would be worth it. I was much more open to sharing those experiences because I didn't feel I would have that stigma of thinking.
 I don't want people too close for you to know too much. But now I just share it because just the reason that it meant so much to me that other people shared their stories and it makes it so much less scary. Just to have one person say to you, I know how you feel and know what you're going through, that makes a world of difference.
I remember the day I was told in the doctor's office; obviously they tell you that you're at end stage cystic fibrosis, meaning without any treatment, you probably have a year to live and lung transplant doesn't cure it, but it can extend your life. I remember crying because it's just very overwhelming.  When you think, oh this means you know, I could possibly die very soon. Growing up, pretty healthy. 
I didn't think my life would be to shorten. Then after that, there's about four months of testing and evaluation you have to go through just to see if you qualify. Because, even though you're at end stage, they want you to be as healthy as you can, to go through. Lung transplants are considered the hardest surgery that you can go through physically.
Each transplant center have an average waiting time. For my center  it was four months, but because of my size and the fact that there aren't as many organ donors as we need. I ended up waiting 28 months and my disease progressed through that time as I spent more time in the hospital. 

Managing Fear While Waitlisted

It's scary because you don't, you don't know what the outcome's going to be. I didn't know if I would get a transplant before I passed away. I didn't know how long. You know when you have a scheduled surgery you can think, okay, I just have to make it to this point and with that unknown, like I didn't know. Everything came down just day by day.
I just wanted to make it through and get to that point, so it's overwhelming. I actually was diagnosed with, major depressive disorder and anxiety during that time. I went through talk therapy and took antidepressants because it was like you said; it was just mentally tolling to take it day by day, not being able to make long term plans. To not to see an end to it coming.

Mental Health Post Transplants

I also went through it again after transplant and I felt, I'm not sure how common it is coming out of transplant. I felt really guilty. I felt guilty that I have this transplant and there's so many other people that need transplants. I didn't, you know, you can't guarantee anybody else is going to get a transplant or they're going to be successful.
Through social media I knew people who passed away either waiting for transplants or after they received them they didn't recover well. That's a hard thing to take too. Also looking at, you know, I have a donor, a person who had to pass away so I could have this chance. It's a lot of pressure on you, I want to be the best person that I can. I want to do everything I can now for my donor, for their family, for my family, because my family, my poor parents had to go through that with me as well.

The Role of Support System in the patient journey

I have friends and they actually live in Orlando, their about an hour and a half away and every time I was in the hospital they would come and visit me. My fiancee John, he was there as well.  Every trip to the emergency room, he had to either drive you there, or call the ambulance. My parents actually live in Minnesota and they came down and especially during my recovery, I had to have full time care for about three months after my transplant.
My parents came down and did that. A lot of people sacrificed time from work, time from their social lives. I know mentally it was hard for them as well. But yeah, I wouldn't have gotten through without them helping me. Just not only physically because I couldn't breathe, I couldn't cook. When it came down to it, I needed help washing my hair, things like that. Then just mentally having them keep me up for every day and getting through really made a difference.

Processing Donor's Decision making process

It's overwhelming to know that somebody I've never met and will never meet, literally saved my life. They made a selfless decision and their family did, before they passed away. I can't imagine during the time of losing a loved one making such a big decision. It's been almost four years, that's more holidays, I've had with my family, days I've had with my friends. I've volunteered and I'm just happy to wake up every day. It's a very overwhelming thing. 
I think, I think people need more education, more facts about organ donation. I think there's a lot of false information or stigmas that are around it. People think if you went into a hospital, they want to save your life, if they knew you were at organ donor, which is completely false. They always do everything they possibly can and also that it's something that will come down to your family or your next of kin.
It's important to talk to people around you that want to be an organ donor because in that hard time it could be hard for them to make that decision. If they know your wishes it might be a little easier. It was great during translated really awesome nurses and they worked specifically with transplant patients so they knew the process and they knew how hard it was everyday, you know, just to eat, to get up and walk and all of that.

Clinicians, self advocacy & Patient Experience

I actually had a really great nurses and especially because you don't spend a lot of time with your doctor, you spend more time with your nurses. They're there 24/7. I got to know them and their family stories and they got to know my family that would come to visit. I think that reaching out to the staff, to the health care provider, they were there when your family's not there and I just had really great nurses. I was very lucky. But again, their kind of that bridge between you and your doctor as well. So it's important for them to know everything you're going through and to voice when you have pain.
When you have problems with medications and things like that. Be your own advocate and be outspoken and don't be afraid that anybody's going to judge you or you know. I think I went through that, especially as the kid, I wanted to be the perfect patient, I wanted to come in and you know, I didn't want to complain and that. But, it gets you in more trouble when you don't because then you have problems that you're not taking care of. Don't be afraid to voice anything.

A Day in the Life of Brigette

Very busy, very scheduled. A lot of the treatments that we do. The nebulizers, there's also a thing called a vest machine and it's literally you put on the vest, it hooks up to a machine and it shakes. It does percussions on your chest to also help break up that mucus and those treatments are done two to three times a day and it can take up to an hour each treatment so that along with pills two to three times a day. It's a very laboring process to take care of yourself.  Also, frequent doctor appointments.
There are designated cystic fibrosis centers at certain hospitals and I've been seen at those, I've been seeing just at hospitals and I will say it's very different. The cystic fibrosis centers, they know about treatments, they know how the disease progresses and generally in a hospital it's not something that's seen commonly. It can be hard to be properly treated. The way you would treat infections would be different than with an average person. Sometimes there's a lot of confusion there. It is a very extensive disease, unfortunately. Medications and treatments.

The Cost of Wellness for CF Patients

The machine I was talking about, the vest machine, most families can't afford it. It's thousands of dollars and so things like the Cystic Fibrosis Foundation or you can find other areas that can help you.  Sometimes people donate the machines when they don't need them anymore because they are such a high cost. Medications are expensive, my parents both had to work full time when I was growing up so I could have health insurance. 
When I aged out of their insurance, I had to focus on getting a good job, getting something that I could support myself and get the insurance to pay for those medications. That's hard too because a lot of times when you get to adulthood, your disease is so progressive. It's hard to work full time, but you know, you have to choose what you're going to do. So I worked probably longer than I should have, they told me. 
I needed that insurance, I needed that help. So I'm not sure what the answer is, but, somehow bringing down the cost of drugs  would help, also, the amount of time before a drug can become generic. A lot of the drugs we take when they first come out, obviously they're patented and they're expensive. I think maybe shortening that amount of time and allowing other companies to produce, explaining things. It's kind of a monopoly with very few drug companies that produce the drugs needed.

The Future for A Regenerated Double Lung Transplant Recipient

I would like to tell my story more in person, maybe a volunteering. There are a lifelink Florida's organization that procured my donor lungs, so maybe working with them or somebody,  just to share my story to raise more awareness about organ donation and what that can do. I've been keeping myself healthy and building up that stamina so I can do a little more physically. That's why social media's easier for me a lot of times.
I still have a lot of treatments, a lot of doctor's appointments and things. It's easier for me to get messages out that way. I think it's up to every patient because I know there was a time that I wasn't necessarily ready for everyone to know all those details and it can be very hard. I think if you feel you're ready and you can do it in small steps, even just talking to people in your life, your friends or people you work with and then kind of building up from there.

Social Media & Patient empowerment

I wouldn't tell people yes or no.  I think it beats a person's journey.  But just for me it was very therapeutic, it helped me kind of process everything that was going on. Again, I moved down here from Minnesota with family and friends in other states. It was easy for me to update them on what was going on rather than having to call all of these people. I would just say if you want to do it, don't be afraid to take those first steps.
Even if they're little, take it day by day and know that you're strong and you're going to make it through and don't be so hard on yourself. Don't think you have to do everything yourself. Be okay to ask for help and reach out to people, because it can be isolating as well. Also, you don't want to feel like a burden on somebody else, but you're not. There's people around you for a reason and they want to help you out and take care of you.

Brigette Mckern: Instagram | Facebook

Alisha M Bridges, Psoriasis & Mental Health Advocate

"I asked that elected officials, first find bills that allocate for the N.I.H and C.D.C. for research of chronic illnesses and to look at the bill for step therapy and revaluate and look at your friends and family" Alisha M. Bridges.


Alisha M. Bridges, Psoriasis & Mental Health Advocate

Psoriasis is an autoimmune disease, basically people living on with the condition have an overactive immune system which causes us to create skin cells that we don't need. Now in a normal body that does not have psoriasis the skin cells are created, replaced and die within 28 days. For someone who has psoriasis that cycle is happening within 3 days and the body cannot keep up with that passes in order to properly flake off the dead skin cells.
So with that happening the dead skin cells start to build on top of good skin. If you have psoriasis a lot of characteristics of it will be dry, inflamed patchy skin. It can be painful, it can be very itchy and it can be had a debilitating disease. It’s also associated with arthritis which is another autoimmune disease that is basically your body attacking itself within the joints. A lot of people have a misconception that psoriasis is a skin disease, but given the explanation I just gave as to how it works in your immune system you can see that it's much more than that.
I was diagnosed when I was seven years ago. It came after a case of chickenpox and I had always had plaques of dry skin on my knees and elbows, but at that time we just thought that I was just really ashy. We did not know that I was going to have to face my autoimmune disease a couple years later. After the chicken pox came which was very common when I was growing up in the late 80's early 90’s my grandmother noticed that my skin was not healing like it normally should after someone encounters the chickenpox virus.  So she took me to the dermatologist, they surveyed my skin and based on the look of my condition as well as family history of psoriasis they then been determined that that is what I had. 

Growing Up With Psoriasis  

Growing up with psoriasis as an African-American definitely has some unique challenges. My psoriasis does not look like what is in the textbook and described in the textbook as characteristics of psoriasis. So usually people will say “Well psoriasis is red inflamed patches”. Well for a person of color my plaques were not red, they were brown to a purple color.
So in one instance I've definitely faced some challenges just from a health and medical standpoint, because sometimes doctors didn't even really know if what I had was in fact psoriasis because they weren't well versed in dealing with people of color who had the disease. So that meant a lot of times a lot of misdiagnoses. I’ve been diagnosed with funguses of the skin other conditions of the skin. It was a lot of trial and error as far as different medicines that they would use just to see if something would work.
Based on the medicines that did work sometimes it was determined that I had psoriasis. Now outside of that as far as like quality of life and just interacting with other people it has definitely been a challenge. People have added more misconception when it comes to visible diseases. They automatically think you know you're contagious or I'm going to catch it or something is wrong with you. So that in itself is challenging just as a child living with a visible disease. It was then became my responsibility as a seven year old to have to explain to my peers as well as adults what I was dealing with and that's a lot to put on an adolescence.

Self Esteem  & Living With Psoriasis

It also affected my self-esteem and the want and inability to do things comfortably. And it just has affected my whole entire life. There was not a day where psoriasis did not play a role somehow in my life. It was hard for me to deal with the stress of stigma that came with psoriasis. I internalized a lot of pain and challenges that I faced. I didn’t think that those around me would understand what I was dealing with mental emotionally, not even trusted family or friends.

I kept a lot inside of what I was going through. And often times being in an adolescence I really didn't even know how to properly express those feelings, to articulate in a good way it's of people to tell them how I was truly feeling. You know you don't have many options growing know with psoriasis as a child. There’s not a lot of medical options, there's not a lot of medicines, because they don't want to try harmful substances on kids. So I really suffered emotionally and mentally and sometimes I feel that those components were way more difficult to deal with than the actual physical effects of the condition.

Retrospective Thinking;  Improving Your Overall Health

If I could go back to my younger self who was afflicted with psoriasis, I would definitely say “Don't give up”. I would say that “There is definitely a light at the end of the tunnel” and I will also tell her “To allow herself to be used where it hurts”. I feel like a lot of times difficult challenges in our lives or hurtful challenges in our lives are the things that give us purpose. I would definitely tell her “Do not give up. Allow psoriasis to give you purpose, to give you passion and to inspire others”.
I will also tell her that “There will be people who love and accept her despite her disease and that people will embrace her and people will be inspired by her story”. So just keep pushing experience, because a lot of what I've been through, a lot of the stories that I have and testimonies to give to people only came because I allow myself to experience life. Although some of those experiences were difficult, they were uncomfortable, it’s all for a greater good and a greater purpose. 

Blogging & Psoriasis

For years I hid the fact that I had psoriasis, one of which I was embarrassed, I felt alone and I felt as though people were not understand. About eight or seven years ago I just had this epiphany and I ended writing a blog post on a psoriasis support group entitled My Suicide Letter. And so the My Suicide Letter was not about a physical death, it was not about taking my own life, but it was about killing those parts of me that were insecure, that had fear, that had shame that just was embarrassed due to my disease. To kill those parts of myself so that I could truly live.
It really was nothing planned out, it was just something that I wrote in the spirit of the moment and decided to share in the psoriasis support group, because I felt like other people there could understand and could relate to those feelings that I gave within the letter. Well it almost went I guess viral on the psoriasis community and got passed along and so many people were inspired. The National Psoriasis Foundation reached out to me and invited me to their conference that was taking place that next year. I went there for the first time in my life I've seen people who have psoriasis.
I still don't really see people of color, but I finally met others who were living with this disease. Even an elementary teacher that I had seen at school when I was younger, he has psoriasis and he was at that conference.  We passed each other every day and did not realize that we both were battling the same disease because many of us live with psoriasis do so in secret. So during that conference they had a workshop about blogging and getting your story out to writing.
At that time I thought to myself “Well that's something I am comfortable with and that I can do, because I can write, share my feelings, shut the computer and go on about my day”. I don't have to be overwhelmed with like negative comments that she might feel in person and you know if I'm not comfortable with something I can just delete the post then move on about my day. So it started off as kind of like a safety net, writing behind a computer and just post on my feelings online anonymously. And then it grew into something much bigger and it really gave me the power to not only tell my story online but to tell it to anybody who I feel like needs to hear.

Patient Activism

My life and decision to become a patient advocate for psoriasis as well as mental health has given me purposes and passion and I feel like at this point in my life I'm exactly where I need to be. Every morning and I get up and do this where whether is at a conference or speaking in or message and someone online or blogging. I feel like this is where I am supposed to be, like this is where I’m most comfortable, where I’m most happy, where I find the most joy. It also has empower me to take even more consideration of my health and advocate for myself when it comes to medical professionals and doctors. I know what medicines are currently out, I know the side effects of those medicines. I have a voice in the decision of treatment options for myself. I understand the risks and I'm able to speak up for myself when I'm speaking to doctors and nurses, which a lot of people are afraid to do. Being a patient advocate definitely empowers me to just care for myself as well as others, because I know on the large spectrum of things that this will help all patients, not only ones just psoriasis but living with any type of chronic illness. The first step is to have patient advocates be the voice for the people who are kind of afraid to speak out for themselves.

Discrimination & Psoriasis

We live in a society that is very driven by physical appearance, so I having a visible disease like psoriasis definitely brings about a lot of discrimination and bullying even among grownups, it's not just kids. I have been made fun of by my peers when I was younger and I have even been made fun of by grownups on the job. When you have a visible disease it really makes you a target, and it make you an easy target because it's something that people can see and can talk about. Like if you have something like let’s say diabetes where if you don't tell anybody they absolutely don't know that you're dealing with that. Since psoriasis can be seen it causes people to isolate.
I have lots of friends who have been discriminated against at pools, they have been asked to leave and ask to bring documentation proving that what they had was not contagious. I was discriminated against at work one day a guy came up to me and told me that I was a very pretty girl but I had ugly skin and that is literally the words that he said to me.
I even remember being a college student and having to share a bathroom with my suite mates and the embarrassment of my skin flaking and no matter how much you tried to clean up behind yourself, you always left a party behind when you're living with psoriasis. That causes people to isolate, causes them to be by themselves because it's easier just to keep to yourself, compared to having to always explain what is going on with your health. And it's easier to be by yourself because you don't risk being discriminated against, teased and really just hurt emotionally by those around you.

Combating Isolation Through Patient Advocacy

There are a variety of ways that patients can advocate for themselves as well as others. From one I feel it's very important to connect with the National Psoriasis Foundation because they have an array of resources that you can use that you probably wouldn’t even know existed if it wasn't for the N.P.F. They have a one to one mentor which allows you to connect with other people.
They also have programs which allow you to reach out to your congressmen and your state if you want to advocate against step therapy or if you want certain funding to go towards research for psoriasis. That's kind of on a large scale. Another point is to get involved in support groups. We isolate a lot when we have this condition and when you isolate you’re energy of like wanting to do stuff for yourself decreases. But if you have a network around you like others with psoriasis, even if it's just online, you will start to feel empowered.
I started to feel empowered when I realized I wasn't alone and I was not by myself and I had a network of people that could help me along even when I didn't feel good emotionally or physically. Support groups are really important and they will kind of keep you aware of the latest trends that's happening in the psoriasis community.  I will also say being honest with your medical professionals. Keeping track of everything that you you have going on, how you feel, treatments that you're willing to take and treatments that you are not willing to take.
That when you get in that doctors office there is no deliberating. This is what I want to do, this is what I'm willing to do, and this is what I'm not going to do. Speak up for yourself when you go to a doctor's office it is not a dictatorship, it's a relationship. That’s like what I like to say. It’s just like you’re looking for a spouse. You tell your spouse your needs they tell you their needs and you work together to accomplish a common goal. That is the same process that it should be when you are choosing a doctor for you.

Social Media & Patient Advocacy

There are lots of ways to advocate for oneself. There are a lot of pros and cons to social media. On one hand I'm thankful for social media and the internet because without it you wouldn't that be here today. I found my voice using online platforms such as Twitter, Facebook, blogs and Instagram. It allows you to connect with other patients to see that you're not alone and it just allows you to really express yourself. On the other hand social media can be very depressing. I talk to my therapists about this all the time.

That's how I feel  although and I'm sure studies already show that there is probably an increase of depression and anxiety due to the increase of social media. For one you're bombarded constantly with the opinions of others, opinions that a lot of times people want to even have the courage to say in person but because it's an online platform they feel like they'll never ever meet you or they can hide behind a totally fake profile. They feel that they can say whatever they want no matter how insensitive it is. It also gives you kind of a false glimpse of what's really going on in a person's life.

Typically people are only going to put when there have been success online, nobody's like oh---some people you know will cry wolf and say that they're having a horrible day. But a lot of people who post you know list their relationship is like “Me and my wife or me and my husband we’re just having an amazing time and I just look so happy” and you're wondering why you can't I have that. But behind the scenes they're going through just all kinds of mess. So on one spectrum social media is great especially for Patient Advocates, on the other spectrum social media can be very overwhelming and you really have to kind of balance out how you use it in create boundaries and do what's comfortable for you.

Building A Support System

For adults living with psoriasis there are a few ways that you can build a support system. First start with your friends and family. The friends the family I would like to say are your backbone. I live with psoriasis for so long and I was afraid to tell those around me how I was truly feeling, but when I got older and got more into my advocacy I realized I missed out on the opportunity to really be supported and empowered by those around me. Your family your friends can't empower you if they don't know that something is wrong. 
If they don't know what you're feeling, if they don't know what's going on in your life. I would say start with you with your friends and family so that they can get the tools in order to help you be successful physically, mentally and emotionally. That's first. The other thing that I would like to encourage those to do is again find a support group, whether it's online or in person. There are a lot of platforms to which will allow you to share your deepest, darkest and most intimate secrets of living with this is the that you may be afraid to share with family and friends.
Other people with psoriasis won't judge you and we 100% get it. So I think that's very important in being an adult with psoriasis. Thirdly I would like to say treat your disease, whether it's holistically or whether it's with prescription medications, but don't go without treatment. When you go without treatment you increase your risk for of the diseases like heart disease, diabetes, diseases of the eye and definitely mental health issues.
That’s number one depression. So make sure you are actively attempting to treat your condition. If you're worried about concerns of price, talk to your doctor, there are many patient resources out there that will help you to get the treatment that you need. And try holistic approach, if you don't want to do medicines. Now usually those take a lot longer to work, but your life in your health depends on it.
Please do something. I would just say don't give up. You know something doesn't work, if someone's not receptive to your story, to your struggle, keep it moving because there's something that will work and there's something----there’s someone who will embrace you. So that’s the advice that I would give for adults living with psoriasis.

The Role Of Elected Officials In Funding & Resource Allocation for Psoriasis

Elected officials can help with the progression of treatments and cures for psoriasis and by making sure that they allocate funding to the NIH and CDC. When they're doing different research initiatives in order to figure out the cause of these chronic illnesses. Even if it's one particular chronic illness, like psoriasis, a lot of times when they reach discovery with our condition at least two discoveries and realizations for other conditions.
I would also like to say reevaluate the terms and conditions of step therapy. Step therapy is basically where patients are required to use cheaper treatments before they are allowed to use the more expensive ones and a lot of times that can be hard on the patient. They’re putting in their body medicines that aren't going to work for them, they're increasing their risk of symptoms and side effects and they're also wasting a lot of money and a lot of time.
 I asked that elected officials, first find bills that allocate for the NIH and C.D.C. for research of chronic illnesses and to look at the bill for step therapy and revaluate and look at your friends and family. How would you feel if it was your son, your daughter, your wife, your husband, as they were in the predicament because honestly they could be in the predicament, because chronic illnesses like psoriasis can come at any point in one's life.

Plea To Change Societal Perceptions of those Living with Psoriasis

Psoriasis is a condition that one cannot help. We do not choose to have this disease or this condition. It is not contagious. It is not something you can catch by touching someone, by having sex with them, it is an auto immune disease, which means that something within our immune system has gone haywire. I would like to encourage people to provide compassion and empathy for those that they see who are different from them.
It just does not have to be psoriasis, because of this condition any time I see someone struggling with something I'm able to empathize. I would like to also pass along the message that any chronic illness can happen to anyone at any given time. You could be perfectly healthy right now in your life and tomorrow be diagnosed with the disease that you now have to live with for the rest of your life. So, please consider how you treat others, what you say and how that may make them feel and consider that it could be you one day or someone close to you that you love.
I’m Alicia Bridges and I am a psoriasis and mental health advocate. You can find me on www.beingmeinmyownskin.com or any social media network @AliciaMBridges. That’s for Twitter, Instagram, Facebook or YouTube. My purpose in life is to be the voice for the voiceless to inspire others with my story in hopes that I create empathy and compassion among those who are the least understood.