Pengantar Redaksi: Artikel dalam Bahasa Inggris ini dimuat di http://patientworthy.com/ Akan dimuat versi Bahasa Indonesia dalam artikel berikutnya. Artikel sudah mendapat izin dari pasien yang bersangkutan: Charis Hill.
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| Glenn Jones/Ikona Photography copyright 2014/2015 |
Charis is a Californian, advocate, activist, avid biker, blogger, and model. She was awarded the 2014 Progress in Policy Award by the Arthritis Foundation, Pacific Region last December for her efforts in Statewide and National legislative advocacy efforts to improve specialty drug transparency (watch her in action). She was also interviewed for an Associated Press article last year related to discrimination by insurance companies against those with chronic diseases and was published in Momentum Magazine about modeling, biking and ankylosingspondylitis.
Ankylosing spondylitis (A.S.) is an autoimmune disease. It is a type of arthritis that mainly effects the spine, causing inflammation and sometimes resulting in parts of the spine fusing together. According to the Spondylitis Association, it is estimated that around 2.7 million adults in the U.S. suffer from A.S. but it is severely under diagnosed.
In this interview with http://patientworthy.com/2015/07/31/ankylosing-spondylitis-patient-real-barbie/ she explains her diagnosis, the everyday realities of living with A.S. and her sheer determination to make a difference.
PW: Was it difficult to get the diagnosis?
Charis: “My biological father has ankylosing spondylitis but I grew up only seeing the physical deformities of that. I didn’t know much about the disease. I didn’t even remember the name of it until I was in my twenties.”
Charis didn’t really believe that she could even get the disease, or a least thought that the chances were very low. Like many other she thought of it as a “man’s disease”. Right before her twenty-fifth birthday however, she began to have health problems that she couldn’t ignore. Scared, she sought answers.
Charis: ” I ended up contacting my father to see what was on his side of the family that could be causing it. A.S. [ankylosing spondylitis] was the last thing on my mind, but I described my symptoms and he said ‘you have A.S.’. I didn’t have health insurance at the time, so the hardest part was finding health insurance that I could afford. Then I had to find a doctor that would refer me to a rheumatologist with manual testing and then get diagnosed by the rheumatologist. For most people I think being diagnosed is a relief but for me it was kind of the opposite it was a letdown to find out I had A.S. and then I had to do the convincing.“
Charis was symptomatic and undiagnosed for twelve years. After she was diagnosed she was able connect years of pain to a singular explanation. She began to have symptoms at just thirteen. Assuming her symptoms were merely signs of growing pains, it wasn’t something she really brought up even to her family. She would lie awake at night from the pain radiating in her back, hips and knees.
Charis: “Right after I was diagnosed the rheumatologist prescribed methotrexate to see how it went. It wasn’t long before I had to advocate for myself again and say I need to take a biologic. I call it my chemo drug; people hate it when I say that because how could anything compare to cancer? But It’s something I have to live with the rest of my life and it’s never going to get better, so it’s accurate. “
While the new, injected medication helps to slow the progression of the disease, it comes with added complications besides the discomfort of the needles. Specialty medications are expensive and hers need to be refrigerated which is a major inconvenience particularly when traveling. Not only that, but due to the autoimmune component of A.S, the drug used to treat it leaves her vulnerable, as she goes on to explain:
Charis: “It’s [A.S.] a form of arthritis, an autoimmune disease, which means that your body is attacking itself. It doesn’t know the difference between healthy cells and unhealthy cells. In a normally functioning body your body knows to attack the unhealthy cells if you have a cold but in my body it attacks all of the cells. The biologic essentially takes away that function. It takes away immunity. Which means if I get a cold I have to stay home, because it could turn in pneumonia quickly.”
PW: Does ankylosing spondylitis pain interfere with your daily life a lot?
Charis: “Yeah, today I’m in a lot of pain, all over. I would be in even more pain if I were not taking the biologic. I woke up today and it felt like I had the flu, aches and pain and fire all over your body. It means that I have to cancel plans, I was supposed to have dinner with friends tonight but I don’t think I’ll be able to. And because it’s all my joints my muscles are working harder to compensate with what my joints can’t do which makes my muscles hurt too, when I’m in this much pain it effects my breathing too. Some days are better than others, this isn’t every day, but I never know when days like this are going to happen. It’s not always that I over did it the day before, which makes it hard to work and keep social obligations, it’s very isolating.”
Charis: “It [ A.S.] affects more people than MS, which everyone’s heard of, but the sucky part is that AS is really hard to diagnose, there’s no recipe, no one test that says ‘oh that’s what you have’. It’s family history or history of symptoms, or test for the gene, but not everyone who has that gene has AS and not everyone who has A.S. [ankylosing spondylitis] has that gene, and it can mimic other diseases so it’s really hard for doctors to say for certain that’s what you have. It also effects every single person differently. I believe there may be different levels of A.S. It may not affect some peoples’ life as much but some people may be in wheelchair and need to be taken care of and will never be without pain. I think I’m in the middle somewhere, but that’s the other confusing part if someone has A.S., it’s not the same story for everybody.”
PW: Have you had difficulty explaining your condition to others?
Charis: “It’s a very pleasant surprise when I come across a health practitioner who has heard of A.S. It’s even more awesome when I come across someone who has not only heard of it but can talk about with me and really knows about it and not just the name. We’re far from being able to know that when we walk into any doctor’s office people will know what we have and how to treat it. I think that that makes it seem more rare a condition than it is, because even people within the health care community don’t know much about it. Sometimes I feel even like I’m educating my rheumatologist who is supposed to be the expert on A.S. I feel like if you have a chronic disease it’s less of going into it as a recipient of care but as a part of a collaboration of your care.”
Charis: “I lead a support group for spondyloarthritis; we always have to be up to date on our own health care. We meet once a month. It’s a lot of work but it’s worth it. I have my spondylitis family because we’re the only ones who understand what each other is going through. I can’t tell you how meaningful it is to be able to sit in a room with people and talk about something that I’m going through without having to explain the origin of it. I can say I hurt here today and the people there get it and it’s, ‘yup that was me last week’ not, ‘why do you hurt there?’. It’s sponsored by the Spondyilits Association. When I was diagnosed I knew I needed a support group and when I looked for one there wasn’t one here[Sacramento], so if I didn’t start it who would? We’ve been going for about a year and a half now. I know I’m unique in my fight because what motivates me and gives me hope is doing advocacy; is the support group and speaking in front of California state legislature about health. I feel powerful but I know that’s not what everyone wants, they just want someone who gets it, who they can talk to.”
Charis: “What helped me, though I can’t say that this would help everybody, and continues to help me, is being really open about my story and experience with anybody, but especially with people who are closest to me because they’re going to be my biggest supports and advocates. But that’s who I am. Not everyone wants to talk about their health openly. So finding a support group, whether it’s an online community, Facebook group, online forum, even if there’s not a physical support group in your area, find people you can talk to who are going through the same thing. I think anyone who’s dealing with a chronic disease should find people who can be mentors. So you’re not on the road alone. The Spondylitis Association of America can help you find support groups in your area.”
Charis: “I don’t see a cure happening in my lifetime but I think with more research specifically to find out what causes or triggers A.S., will greatly help the kinds of treatment that we figure out for the disease. What would be really awesome for me is if somewhere somebody figures out some way to halt the progression of my disease, not just slow it down. As it is now I’m scared of my future. I know I will always be getting worse because it’s a degenerative and progressive disease. I know I’ll never get better so I feel like I’m living life backwards. I can’t work and wait until retirement to do what I want to do. I feel like I need to do it now because I don’t know how much my body will fail me later. I have no choice but to live for today because I don’t know what I’m going to lose tomorrow. If someone could halt it I would know what my body would be like tomorrow; I could plan for the future because I’d know what to expect. I think the more people who share their stories the better off we’ll be for people to understand what we’re doing through.”
Charis: “I won’t let this disease win. Even though it feels like it is some days, some days it feels like no hope, I need to provide an inspiring message that I’m not giving up and they shouldn’t either.”
If you want to see the next amazing thing this remarkable woman and advocate for ankylosing spondylitis does, simply follow her on Twitter and Instagram @forestfirebears.
Ankylosing spondylitis (A.S.) is an autoimmune disease. It is a type of arthritis that mainly effects the spine, causing inflammation and sometimes resulting in parts of the spine fusing together. According to the Spondylitis Association, it is estimated that around 2.7 million adults in the U.S. suffer from A.S. but it is severely under diagnosed.
In this interview with http://patientworthy.com/2015/07/31/ankylosing-spondylitis-patient-real-barbie/ she explains her diagnosis, the everyday realities of living with A.S. and her sheer determination to make a difference.
PW: Was it difficult to get the diagnosis?
Charis: “My biological father has ankylosing spondylitis but I grew up only seeing the physical deformities of that. I didn’t know much about the disease. I didn’t even remember the name of it until I was in my twenties.”
Charis didn’t really believe that she could even get the disease, or a least thought that the chances were very low. Like many other she thought of it as a “man’s disease”. Right before her twenty-fifth birthday however, she began to have health problems that she couldn’t ignore. Scared, she sought answers.
Charis: ” I ended up contacting my father to see what was on his side of the family that could be causing it. A.S. [ankylosing spondylitis] was the last thing on my mind, but I described my symptoms and he said ‘you have A.S.’. I didn’t have health insurance at the time, so the hardest part was finding health insurance that I could afford. Then I had to find a doctor that would refer me to a rheumatologist with manual testing and then get diagnosed by the rheumatologist. For most people I think being diagnosed is a relief but for me it was kind of the opposite it was a letdown to find out I had A.S. and then I had to do the convincing.“
Charis was symptomatic and undiagnosed for twelve years. After she was diagnosed she was able connect years of pain to a singular explanation. She began to have symptoms at just thirteen. Assuming her symptoms were merely signs of growing pains, it wasn’t something she really brought up even to her family. She would lie awake at night from the pain radiating in her back, hips and knees.
Charis: “Right after I was diagnosed the rheumatologist prescribed methotrexate to see how it went. It wasn’t long before I had to advocate for myself again and say I need to take a biologic. I call it my chemo drug; people hate it when I say that because how could anything compare to cancer? But It’s something I have to live with the rest of my life and it’s never going to get better, so it’s accurate. “
While the new, injected medication helps to slow the progression of the disease, it comes with added complications besides the discomfort of the needles. Specialty medications are expensive and hers need to be refrigerated which is a major inconvenience particularly when traveling. Not only that, but due to the autoimmune component of A.S, the drug used to treat it leaves her vulnerable, as she goes on to explain:
Charis: “It’s [A.S.] a form of arthritis, an autoimmune disease, which means that your body is attacking itself. It doesn’t know the difference between healthy cells and unhealthy cells. In a normally functioning body your body knows to attack the unhealthy cells if you have a cold but in my body it attacks all of the cells. The biologic essentially takes away that function. It takes away immunity. Which means if I get a cold I have to stay home, because it could turn in pneumonia quickly.”
Glenn Jones/Ikona Photography copyright 2014/2015
PW: Does ankylosing spondylitis pain interfere with your daily life a lot?
Charis: “Yeah, today I’m in a lot of pain, all over. I would be in even more pain if I were not taking the biologic. I woke up today and it felt like I had the flu, aches and pain and fire all over your body. It means that I have to cancel plans, I was supposed to have dinner with friends tonight but I don’t think I’ll be able to. And because it’s all my joints my muscles are working harder to compensate with what my joints can’t do which makes my muscles hurt too, when I’m in this much pain it effects my breathing too. Some days are better than others, this isn’t every day, but I never know when days like this are going to happen. It’s not always that I over did it the day before, which makes it hard to work and keep social obligations, it’s very isolating.”
Charis: “It [ A.S.] affects more people than MS, which everyone’s heard of, but the sucky part is that AS is really hard to diagnose, there’s no recipe, no one test that says ‘oh that’s what you have’. It’s family history or history of symptoms, or test for the gene, but not everyone who has that gene has AS and not everyone who has A.S. [ankylosing spondylitis] has that gene, and it can mimic other diseases so it’s really hard for doctors to say for certain that’s what you have. It also effects every single person differently. I believe there may be different levels of A.S. It may not affect some peoples’ life as much but some people may be in wheelchair and need to be taken care of and will never be without pain. I think I’m in the middle somewhere, but that’s the other confusing part if someone has A.S., it’s not the same story for everybody.”
“I won’t let this disease win… I need to provide an inspiring message that I’m not giving up and they shouldn’t either”
PW: Have you had difficulty explaining your condition to others?
Charis: “It’s a very pleasant surprise when I come across a health practitioner who has heard of A.S. It’s even more awesome when I come across someone who has not only heard of it but can talk about with me and really knows about it and not just the name. We’re far from being able to know that when we walk into any doctor’s office people will know what we have and how to treat it. I think that that makes it seem more rare a condition than it is, because even people within the health care community don’t know much about it. Sometimes I feel even like I’m educating my rheumatologist who is supposed to be the expert on A.S. I feel like if you have a chronic disease it’s less of going into it as a recipient of care but as a part of a collaboration of your care.”
Charis: “I lead a support group for spondyloarthritis; we always have to be up to date on our own health care. We meet once a month. It’s a lot of work but it’s worth it. I have my spondylitis family because we’re the only ones who understand what each other is going through. I can’t tell you how meaningful it is to be able to sit in a room with people and talk about something that I’m going through without having to explain the origin of it. I can say I hurt here today and the people there get it and it’s, ‘yup that was me last week’ not, ‘why do you hurt there?’. It’s sponsored by the Spondyilits Association. When I was diagnosed I knew I needed a support group and when I looked for one there wasn’t one here[Sacramento], so if I didn’t start it who would? We’ve been going for about a year and a half now. I know I’m unique in my fight because what motivates me and gives me hope is doing advocacy; is the support group and speaking in front of California state legislature about health. I feel powerful but I know that’s not what everyone wants, they just want someone who gets it, who they can talk to.”
Charis: “What helped me, though I can’t say that this would help everybody, and continues to help me, is being really open about my story and experience with anybody, but especially with people who are closest to me because they’re going to be my biggest supports and advocates. But that’s who I am. Not everyone wants to talk about their health openly. So finding a support group, whether it’s an online community, Facebook group, online forum, even if there’s not a physical support group in your area, find people you can talk to who are going through the same thing. I think anyone who’s dealing with a chronic disease should find people who can be mentors. So you’re not on the road alone. The Spondylitis Association of America can help you find support groups in your area.”
Charis: “I don’t see a cure happening in my lifetime but I think with more research specifically to find out what causes or triggers A.S., will greatly help the kinds of treatment that we figure out for the disease. What would be really awesome for me is if somewhere somebody figures out some way to halt the progression of my disease, not just slow it down. As it is now I’m scared of my future. I know I will always be getting worse because it’s a degenerative and progressive disease. I know I’ll never get better so I feel like I’m living life backwards. I can’t work and wait until retirement to do what I want to do. I feel like I need to do it now because I don’t know how much my body will fail me later. I have no choice but to live for today because I don’t know what I’m going to lose tomorrow. If someone could halt it I would know what my body would be like tomorrow; I could plan for the future because I’d know what to expect. I think the more people who share their stories the better off we’ll be for people to understand what we’re doing through.”
Charis: “I won’t let this disease win. Even though it feels like it is some days, some days it feels like no hope, I need to provide an inspiring message that I’m not giving up and they shouldn’t either.”
If you want to see the next amazing thing this remarkable woman and advocate for ankylosing spondylitis does, simply follow her on Twitter and Instagram @forestfirebears.
All images by Glenn Jones/Ikona Photography copyright 2014/2015
