Anna Legassie | Six Hips and Counting

"We need transparency across every aspect of patient care right now. I know that it's very easy to point our fingers at bag of pharma and drugs are so expensive and they are and they shouldn't be in many cases" Anna Legassie. 

 

Anna Legassie is an Athlete, Writer, and Advocate.

Welcome to Anna’s Health Journey

I have been living with systemic juvenile idiopathic arthritis SJA since I was eleven. I’m also one of the lucky few that has a positive rheumatoid factor, which means I have rheumatoid arthritis too. I have both auto inflammatory and autoimmune arthritis. I started becoming symptomatic when I was eight with mostly knee pain that was like my initial complaint. My knees hurt, I was a really active kids, climbing trees, running, riding my bike everywhere.Our pediatrician at the time just basically said “This is probably growing pains, take some children's Tylenol and keep an eye on things”. Over the course of the next few years it went from just knee pain to sort of all over joint pain, body aches, fevers, nausea , headaches , fatigue, and excessive bruising. I remember getting hit during a basketball game, like somebody just hit my arm and the next they had this massive bruise, massive swelling. Then finally I started getting rashes that would sort of cover my neck all the way down to my belly.
When I was in sixth grade I was eleven years old, I played the clarinet, I was very cool. I was ready for Christmas time and we had a big rehearsal for the holiday concert. We'd been sitting for a few hours and when we went to stand when we were done I just collapsed at that point. It was really just that for those three years I had been sick and my disease was advancing but we didn't know. My mom was already on the way to school to pick me up. I was admitted directly to the hospital, tested for childhood leukemia and cancers and it just took a while of ruling things out before somebody said “let's start to look at autoimmune disease, auto-inflammatory disease”. I was 11, it was December 21st, days before Christmas and that was when I got the initial SJA diagnosis. A few weeks later I found myself with really intense chest pain. The thing about SJA that's different than a lot of childhood arthritis is that it can cause inflammation in the liver or spleen, and enlargement of lymph nodes which is why they actually were looking at childhood cancer, leukemia, anemia as well as inflammation in the lungs and the heart. Here I am having this chest pain at the age 11 and by the time everything sort of transpired figuring out how do you treat an eleven year old with chest pain we found ourselves in the local ER.
I was in acute congestive heart failure because of such a massive buildup of fluid around my heart. We were airlifted to Boston Children's Hospital and was put in a medically induced coma for about six weeks really to protect other organs from failing as well. That was just a byproduct again of that the three years it took to get a diagnosis of my disease, as it kept advancing unchecked and we had no idea. SJA is a fairly rare diagnosis, so even after getting the diagnosis in the hospital people didn't really know what to do with it.Nobody thought well maybe you should have a chest X. Ray real quick on the kid before we send her home. I found a little bit of sort of stability for the next few years. Then at 14 I had both my hips replaced and at 15 I had surgery. So 14 was freshman year in high school; Both my hips replaced as a freshman in high school which still is a very strange thing to sort of think about that that actually happened to me. I would have had knee surgery on my left knee when I was a sophomore in high school. I had knee surgery on my right knee you know as a junior in high school. During that time it was actually when the first biologic drugs hit the market for rheumatoid arthritis.

Navigating Bureaucratic Insurance policies

I remember my pediatric rheumatologist wanted to prescribe one of those drugs, she was so excited. They first hit the market and they were F.D.A. approved for adults and I think in two years they got pediatric approval for them. We really finally thought we had some hope on the horizon for treatment, but unfortunately because this was sort of I don’t want to say experimental, but, new this is really the first time we had any of these biological agents. Our insurance company at the time wouldn’t pay for them. They said you know if there is not enough data in the pediatric population from a safety standpoint so no to those. I graduate from high school, I was eighteen years old and as soon as the calendar---it was literally just the calendar flipped and I was eighteen we could go ahead and re-submit the approval for those drugs and get started. Finally, around eighteen I had a little bit of sort of treatment stability in my life. We finally had something that was actually targeting the progression of the disease and not just symptom management, which is really what everything else is, whether it's steroids or NSAIDS. All they’re aimed at is managing the symptoms of the disease not its actual progression.

Living with chronic illness through early adulthood

Things are looking up, I go to college and I was still really healthy---well not healthy, but still a really active kid once I got my hands replaced. By the time I was twenty my right hip replacement failed for the first time. So I had surgery, had hip surgery again as a sophomore in college. I think I was twenty and then and from twenty to twenty six was really sort of chaotic both in my own life and my family's life. My mom was at the end of a terminal illness at that point and I was back and forth from school with her, my sister, my own doctors and sort of trying only keep my head above water at that point. My mom died when I was 22 and I came home from school permanently at that point to help take care of my younger sisters. I had quit my job and I didn't have any health insurance. So I was really self-managing my arthritis through those very palliative NSAIDS and steroids just with my primary care physician, because at that point I didn’t really feel like I could make my own health a priority. I really need to be there to take care of my family.
For a few years of me trying to re-enter the workforce and finish school and all that stuff. I finally had health insurance again and went to my doctor and started with new doctors. I was 26 and I found a new rheumatologist, a new orthopedic surgeon. My old surgeon had unfortunately retired. And the first time I met my new surgeon what was said was “I hate to be the one to tell you this but your hip replacements has failed catastrophically. There is absolutely no medical explanation for the fact that you're walking around. We need to get you in the you know OR A.S.A.P.”.I was back in school at the time like, wait a second. I need to finish spring semester and then I want to take a six week summer class that goes from June into July”. I was like “Let me finish that class and then we'll do surgery”. So I had a bilateral revision of my hip replacements when I was 26. I didn't really understand about that surgery before I've done it is you're going to be 100% non weight bearing on both sides to protect both knee joints.
I needed to go to a rehabilitate hospital for several months after surgery. I had to relearn how to walk I don’t think people really think of that being an experience for somebody who has arthritis. I was discharged and me being who I am full steam ahead and back to work, back to school and my six month checkup which would have been in January the bone graft of my right hip had failed again and so I needed to have that right hip operated on for a fourth time. At this point I was overwhelmed. Just very mentally overwhelmed by what was happening and I remember asking my surgeon “What would happen if we didn't do surgery like next week? Can I do like an additional long term damage?” He said “You're really not going to do long term damage, you're going to be an increasing amount of pain. Think about the socket where your hip goes into and this last line that they put the end it had separated and it was on a single screw and it was rocking back and forth. It was just the eroding one side of the joint and it just rocked back and forth”.
I just said you want to just push this out a year like really since I was eleven years old I had  no normalcy in my life. I just want to work, go to school, hang out with my friends and go to Red Sox games with my boyfriend. Like I don't--you know what- pause, we’re just going to press pause on all of this. And so that's what we did and I had the surgery the following January 2011. That was my last hip surgery, almost seven years ago, which for a long time I wouldn’t even say that. I was afraid that if I said its seven years I was tempting the universe and I would bring this more pain and suffering upon myself.

Arthritis, Surgeries and Resiliency

It’s taken me a really long time to let go of that and just appreciate that I didn't do anything wrong. This is just the nature of this disease, because even after you have a joint replaced you still have active disease in that joint and it still attacks the replacement in the same way that it attacks bone. I've had some complications too that made that bone graft failed. So that was my last hip surgery which is very exciting. Then it was kind of a period of status quo for about five years and sort of cycling on and off different biologic drugs as we tried them and they failed and in 2016 I was really starting to have a lot of trouble with my left wrist, like gripping things specifically.
I remember trying to hold water glass in my kitchen and I dropped it and it shattered. My boyfriend Ken was running in from the other room he was like “What happened?” I’m like “I don't even like know, I just can't hold things”. Really what it is, I have just such extensive damage in the left joint--out the left wrist joint that there's compression of the nerves. There’s all sorts of just not happy things going on in there. But despite all of this I’ve really liked clung to being active as much as possible. So it wasn't just like grip strength at home. I couldn't put pressure on it, like downward pressure to do yoga which is something I love. I Couldn't even lift weights even -- a 5 pound dumbbell, I couldn’t grip to hold it.
So I went to my surgeon fully expecting him to say you know we just need to replace the joint or we need to fuse it. I told him that I didn’t want to do either of those things because more or less I will lose all range of motion in the joint. His idea I which is a little bit--- I'm going to say unconventional, but basically what he did is, he went in and severed five major nerves in the joint. What that does is it cuts off the pain pathway from the damage in the joint to the brain and it also cuts off some of the nerves that were misfiring. It’s only has about a 70% success rate which is why this is not the first line of defense that they go with. But one of the ways they do identify if you're a good candidate is that they go in and they inject the nerves with that they're going to sever with light-a-cane beforehand and if you get pretty instant release--relief rather you're a good candidate.
We did that, I was a good candidate. I did the surgery, I was back in the gym 10 days later with this big funky wrist brace on. And then four months to the day after that surgery I had my third knee surgery on my left knee. I had injured my knee running, but I also knew that there was a lot of other things going on in the joint. I went in, had arthroscopy surgery. They fixed the meniscus tear which is what I had hurt and they also just went and scraped out everything else. More or less bone in the joint, ready for a new replacement as soon as I say go. Some days I feel like go time is like tomorrow and other days I feel like let's put this off as long as possible.

Mental capability of Coping with Chronic Illnesses as a Child

I see this now as an adult and being really lucky to have nieces, nephews and all sorts of wonderful little’s in my life. Kids are so unbelievably resilient, it's just amazing to me. Kids don’t question certain things that we do as adults. Because I got sick at such a young age I didn't really have a normal that other kids did. So I knew that I was going through other things that other kids weren't but I didn't really question it. There was just here it was, much like well this is what I have to do. I have to take this medication or I can't get out of bed. I have to have this surgery so I can get off crutches and walk again. I was on really high dose steroids. Of course my face swelled up, I was easy target I was an easy target for a lot of teasing, a lot of bullying. I think a lot of times kids bully kids when they're sort of afraid of what's happening and I think a lot of my peers saw a very pretty popular healthy athlete one day and somebody who was very very sick the next day. I think that even at a young age my peers probably in the back of their head appreciated that that could happen to them too.

Managing Trauma from having major chronic illnesses, multiple surgeries & consistent series of hospitalizations as a child.

The mind goes to a great length to protect itself and to sort of protect us as we navigate this world. I have been a patient the same hospital for 23 years now, I also work at that hospital now which is wonderful. But there are times when I am running to meetings and I cut through a different clinical part of the hospital and it might be somewhere that I haven't walked through in ten years. Very recently I was---I need to have an M.R.I. and so I went to radiology and they're like “Anna you know better. You know that M.R.I. has moved over here, you need to go here”. I was like “Oh right”. So I as running and I went down this flight of stairs and the flight of stairs was in the pediatric wing of our hospital and I was overwhelmed by this memory of when you're on crutches as a kid-----They probably do this to adults also, but I wasn't allowed to go home until I could navigate as many flights of stairs as I have to get home. so at my house growing up there is the front entry stairs and I lived in a split ranch, so once you came in there was the stairs to go up to the main living level.
I had to be able to successfully navigate two flights of stairs and this stairwell. I hadn’t thought of that in so long and all of a sudden I’m in this stairwell almost 35 years old and I was shaky and I had to sit down on the ground and sort of collect myself and just acknowledge that trauma of everything that I had gone through associated with that surgery and sort of like find a way to manage and let it go and get to an appointment and on time. But it's such a wide spectrum of how I feel about being sick as a kid. Some of it is like a very neatly packaged up into these sort of boxes, very compartmentalize. And even as somebody who goes to therapy religiously and is not embarrassed at all to say so, there are some boxes that we've just not unpacked and I'm not in any big rush because they’re so big to try to take on.
Then other days certain memories or traumas from being sick as a kid just come back and they hit me so hard and it's just so intense to try to weave those into the narrative of my adult life, because now I have an appreciation of really how intense that I had to go through all of this as a kid. How do you think that as a young adult and even to a certain extent as an adult now I am fueled by a good amount of anger and frustration with some of this and it’s taken me a really long time to get comfortable with acknowledging anger. I am like a very non-confrontational person. Confrontation makes me really, really uncomfortable, I don't like being angry, I don't like having fights, I don't like witnessing other exchanges.
It has taken me a really long time to just accept that it's okay to be angry about a lot of these things that have happened to me. And some days I’ll joke with friends and be like how are you doing and I’m just like “Well I'm just a little fireball of rage”. What I've been able to do I think, to a certain extent is acknowledge that anger and then always try to find an outlet for it. so on good days it's you know where I'm very active, it's going to the gym I'll go to the gym for two hours and it's like I don't want to talk to anybody else. I just want to go there and work through my own stuff and just deal with it that way. On my bad days it's just acknowledging that it's okay.
If you mire in that for a day it's not the end of the world and you’re not a bad person and you're not mentally weak. But as a kid I also had parents--I came for a feelings family. My mother's father was a psychiatrist. Being able to express and articulate emotions colorfully is accepted to my family. So I was given space to be angry, what I was never given space to feel was pity for myself. I was never allowed to feel bad for myself. I was expected to go to school when I was able to go to school, I went to school. When I was doing well enough to play sports or go to gym class that's what I did. I was expected to do chores and participate in my family. My mom would bring in laundry baskets and put them next to me and be like “Okay well you can’t vacuum, you can't set the tale but you can sit here and fold laundry”. My parents really tried to give me as much as much normalcy as they could but also still that space to be angry or upset or frustrated because I'm sure as parents they felt it too.

Advice to Chronically Ill Patients

It’s so hard to give other patients advice, even if we have the same diagnosis right, because a lot of the stuff that I've gone through for me sometimes feels like it pales in comparison to what other people have gone through. Then other times and I'm just going to say this and not feel bad about it, sometimes as the other patients I’m like “Can you just like get it together” and that's not very generous of me and I shouldn't do that because I don't know anything that's going on in their life, that there's just such a like wide spectrum of pain and disease progression. I think the biggest thing is finding an outlet that feels good for you. I strive to be super athletic and super active because that is such a core part of who I was as a kid. That sort of anger and that rage that I talk about, a lot of that stems from being a kid who was on the trajectory to be a state if not nationally ranked runner to being a kid in a hospital bed. So every time that I can fight and claw and take even like a little piece of that back, that sort of what helps me keep it together is feeling like I'm not losing ground and I still have part of that as my identity.
That’s not for everybody, it's not appropriate for everybody. I see so many patients that are passionate about art work or they sing or garden or they cook. I know patients that train animals. I think that you can feel angry, you can feel pissed off about all of this. You can feel sad, you can feel like down in that dark place. Now the sunken place is a very popular thing thanks to Kanye on twitter yesterday. But you have to find something that you want to climb out of the hole for. Whatever that is, you want to have kids, if you want to work, if you don't want to work, if you want to volunteer or whatever it is helping find something that feels like a good place to take all of this and direct it at that. The worst times in my life right now even as an adult and being somewhat well adjusted with all this are periods of inactivity when I can't go to the gym.

Perspectives on Achieving Human Centered Care; Advice to all Actors in the Healthcare Space

I love my hospital but it's not perfect because no system is and I think for patients with chronic illnesses in the biggest places that the health systems fail us is by being so sort of like locked into lab reports and that's live and die by the lab report. Good labs mean you're doing well and bad labs mean you're doing poorly. But there is not necessarily but the holistic approach of what that all means. My disease is pretty stable right now and that’s great. So sometimes my labs look good, but what I feel in response to them feeling good there can be a big gap. So whenever I'm talking to new patients about; how do you get to know your providers, how you advocate for yourself etc. I think it's really important that doctors and providers are able to look at the patient as a whole person.
These fifteen minute encounters that we have with our doctors and then they have no idea of the last four to six months of our life depending on the specialists that happened outside of those fifteen minutes. So I worked really hard to get my doctors and my care team to understand what are my life goals because treatment goals really don't mean much if they aren't supporting life goals. When you've been sick for a long time you're able to normalize a lot of things, you're able to normalize a lot of pain, a lot of suffering. you're able to normalize not being able to do things. And when I really decided that I wanted to get more active, that I wanted to lose some weight and feel healthier and happier as a whole human being, person and somebody in a relationship, where there's intimacy and all these different things that make you a whole person.
I realized that I wasn't doing a good enough job saying “I don’t think this treatment is working anymore and we need to try something new”. And so that's kind of I'm always trying to get you know help patients with is “What are your life goals and what you want to do? Do you want to garden? Do you want to be able to pick up your grandkids and have that not be painful? Do you want to walk around the block with your dog? Like what is your big goal in life right now that your illness is an obstacle to? Okay well your doctors need to understand that anything short of that is a failure on their part, which is kind of a harsh black and white way to say it but I think doctors should be motivated to help their patients live really full happy lives outside of their office”.

Most Urgent Need in fixing Healthcare Today

We need transparency across every aspect of patient care right now. I know that it's very easy to like point our fingers at bag of pharma and drugs are so expensive and they are and they shouldn't be in many cases. The fact is, health care as a good or a service or a product is the only thing that you buy without knowing the price up front. The lack of transparency by providers whether it's hospital or doctor or whatever physical therapist doesn't matter, the lack of transparency on what you're actually paying for your care is galling and should be illegal.
It would be illegal for almost any other service. The lack of transparency on the insurance side of what informs their decisions. We really don't know and of course we saw and I don't necessarily like to name names, but we saw a major plan recently come out and say we didn't actually review any of the information in the period of peer medical review. We didn't do that, so there's no transparency and how coverage decisions are being formulated and then when you do get to pharma there's not a lot of transparency in how they price their drug. So this lack of transparency just to me is one of the biggest drivers of cost because--these three systems are not talking to one another. These three systems are entities have no incentive to work together. There’s so much tension that at the heart of it all is the patient and patients are suffering, but the lack of transparency at this point I just don't understand how much longer we can let this go on.

Transitioning from Patient to Patient Advocate

I was given a lot of agency in my care as even a very young child. I was always allowed to question things and to question decisions and ultimately if it did necessarily put my life at risk I was allowed to say no to things. I made judgment calls when I was in high school to come off certain drugs because for me a lifestyle standpoint I could not take the side effects anymore. So advocating for myself has always given me a sense of empowerment in my own illness. Really it was six or seven years ago I had sort of reengaged with different foundations and was back doing a lot of fundraising.  
Fundraising is great and really necessary, but when I talk about things that fill you, fundraising is definitely not one of those things. And I was approached by an organization to attend their advocacy summit in D.C. and I just remember sitting in this room, like a hotel ballroom for a conference and I was like interim, was just like oh my gosh this is what I was supposed to be doing. I had no idea that I could take my story or what I wanted to do to advocate on behalf of myself and it can be powerful for other people.

A Wish for the Future of Healthcare

I think “patent-centered” is a word that's getting used a little too loosely right now. I think that a lot of organizations set out to be patient centered and what I see is their biggest shortcoming, whether it's payers or drug companies, startups, hospitals, whatever is their design solutions for patients, whatever they might be within the healthcare system etc. They get down this process and they have version one and two and three and then they invite patients to the table to basically weigh in on whether this solution is valuable. It's such a waste of time to everybody and at this point I say no to these opportunities because I'm planting my flag on the fact that I want patients involved from the word go.
If you're calling something patient centered no matter what it is, whether it's on the state side or the federal side, F.D.A. The F.D.A. is always forming new patient groups, whether it's a payer, hospital or pharma company wanting to do some nice, happy feel good P.R. If patients aren't in the room from the jump then you've already failed. The other thing is that as we look to patients and we empower them to be a part of this and drive process and drive change---when I see patients paid I feel like the system just sort of continues to take from us and suck us up, chew us up and spit us back out. It's not really equitable to ask patients to help drive change without compensating them accordingly. So involve patients early and often and pay them and compensate them as the experts that they are.
A lot of people know me as Six Hips on Twitter which is sort of the condensed version of my blog, which is Six Hips and Counting which I can take no credit for. My best friend Jenny who's an English teacher and far more creative than I am came up with that. Hoping to stay at just six hips for a while, but on Instagram I’m Anna_Evangeline. I really put kind of my whole life out there for better or for worse. Always looking to connect with more patients and more projects like this!

Contact Info: Website | Twitter | Instagram

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.

Heather Corini Aspell | Visual Storyteller | Artist | Patient Advocate

"The government can continue to provide better services for transportation for disabled people, to actually advertise those services in a way that people are going to see them. That would make a huge difference" Heather C. Aspell


Suggestions for healthcare providers:

Having the providers have more time with patients. I'm not really sure what in the system needs to change in order to make that happen but I know that its not the physicians themselves are not creating the limitations on time. I know doctors who want to spend more time with their patients and they can't, so theres clearly something higher up in the system that needs to change.

Suggestions for government:

 The government can continue to provide better services for transportation for disabled people, to actually advertise those services in a way that people are going to see them. That would make a huge difference. So many people don't know of the services that are already there because they are being marketed more toward the senior population. 

Suggestions for decision makers:

I think we need to have more collaborative discussions between people who advocate for the current insurance system, that we have here in the U.S and a system like they have in Canada and say ok what are the problems with both systems and how can we create some kind of new idea that we haven't come up with yet thats going to allow people with serious chronic illness to get access to specialist without long wait times but also allow people with common ailments to have regular access to preventative healthcare that is affordable.

Unfortunately anyone can ill or disabled so these issues about healthcare, their important, they affect everyone. You may be healthy right now but unfortunately you or someone you love may not be that way. It doesn't matter how old they are, it doesn't matter what their race, gender, ethnicity is you can be affected. Don't pass judgement on those that you encounter who may be chronically ill or disabled. Be mindful of the fact that it could affect anyone, when you're thinking about issues related to healthcare or insurance. and the political area as well.

Overall message to society:

I think the number one thing patients that are chronically ill can do is to start sharing their stories. I think that individual stories are the most persuasive thing that we have. If everyone begins to share a little bit about themselves and their experience with just one person or with thousands through a social media account, then people will begin to get a little bit of a window into what life is like for people like us. Gradually we'll be able to create a shift in what society thinks it means to be disabled or chronically ill.