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“The real me” An interview with psoriasis patient and PatientsLikeMe member Maria

Here at PatientsLikeMe, we’re continuing to talk with people who are sharing their health experiences to help raise awareness about their conditions and change medicine for good. For our latest interview, we spoke with Maria who has been living with psoriasis since age 14. Some of you may know her on PatientsLikeMe as pinkdragonrider. She recently took some time to talk with us about life growing up, treatments she uses and what she thinks those who don’t have psoriasis should know. On your PatientsLikeMe profile, you say you’ve had psoriasis since age 14, with worsening symptoms in your 20’s. Did you experience any stigmas growing up with psoriasis? I consider myself very lucky in that my psoriasis was confined to my scalp until my early 20s. Growing up, I thought I had the worst, most embarrassing case of dandruff, and itchy flaky skin behind my ears. Thankfully, my hair covered most of my lesions. I was not formally (or correctly) diagnosed until I was 23. Only looking back at my childhood do I know realize that I had psoriasis since my early teens. After I graduated from college, which was around the time I had a critical health crisis and …

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“It’s all about attitude.” An interview with multiple sclerosis patient and PatientsLikeMe member Alys

Have you met Alys yet? Some of you may know her on PatientsLikeMe as browneyedgirl3. Alys was diagnosed with multiple sclerosis (MS) back in 1987 and has been sharing her own personal health journey on PatientsLikeMe since 2009. She recently took some time to talk to us about her diagnosis, staying optimistic and what inspired her to write a book. Can you tell us a little about your experience with MS? What your first symptoms were and when you were diagnosed? I didn’t give MS much thought until I was forced to examine the disease on a personal level. I began having symptoms at age 16. I initially had sensory symptoms like numbness, pain, burning, vertigo and fatigue. The headaches were unpredictable but I would just excuse them as typical teenage stresses. The blurry vision was a bother as well. I was diagnosed November 18, 1987 while working as a registered nurse (RN). I was 21 years old.  I was the charge nurse that night so I was busy and exhausted. Suddenly, I was discovering what many people with MS are dealing with on a daily basis and I didn’t like it! I began to encounter symptoms at an age …

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Keith & Sarah’s personal journey with rare lung disease. Part III, “Bonus round”

Over the last few months, Keith and Sarah have been sharing their journey with us. In this final interview of our three-part series, they talk about how he got on a transplant list and their “phones at the dinner table” policy. If you missed our first two interviews with Keith and Sarah, you can find them here. What did you have to do to get on a transplant list? Did you have to meet certain criteria? [Keith] The transplant assessment process is an intense and very time-consuming one. When you are contacted about being assessed for transplant, you are sent a large envelope listing out a weeks worth of testing, doctors visits, and appointments in Toronto at Toronto General Hospital. The hospital evaluates you on many things, and ultimately if you are deemed “healthy” enough (because you can actually be too sick, or too healthy) as a result of this testing, you are placed on the list. There were psychological assessments, nuclear cardiac testing, liver testing, kidney testing, pulmonary function testing, physical testing, blood tests (LOTS of blood tests) to name a few. Can you talk about your “phones at the dinner table” policy and how it changed? [Sarah] Phones …

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“I still haven’t given up hope.” An interview with psoriasis and psoriatic arthritis patient David

Say ‘hi’ to David. Some of you may know him on PatientsLikeMe as db.09. He developed his first visible symptom of psoriasis at the very young age of 3. Now 22, he’s sharing his personal journey with this highly stigmatized autoimmune condition, along with psoriatic arthritis and Chron’s. See how his conditions have actually given him motivation and how connecting with others has positively impacted his life. Are you living with both psoriasis and psoriatic arthritis? Yes, I am living with psoriasis, arthritis and also Crohn’s. How old were you when you were first diagnosed? Have you had to deal with any stigma at such a young age? I developed psoriasis at the age of 3, and 3 years later at the age of 6, I developed arthritis. I was experiencing symptoms of Crohn’s since the age of 11. However, I was only diagnosed with Crohn’s at the age of 17. I’m currently 22 years old. My childhood and teen years were very challenging. My conditions had a massive impact on my education. I missed much of school growing up, due to hospital appointments, and just generally suffering with the effects of living with the conditions. I think the worst …

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Keith & Sarah’s personal journey with rare lung disease. Part II, “Lungies”

In this second interview of our three-part series, Keith and Sarah talk about how their daily lives changed and the importance of connecting with others. If you missed our first interview with Keith and Sarah, you can find it here. What were the most noticeable changes you had to make in your daily life? [Keith] My ability to enjoy time with family was impaired because I could no longer be active with my children or my wife. I could not work because when I tried to do the simplest task, I became out of breath. I could no longer carry a toolbox, go up a set of stairs, or do everyday tasks at home without becoming winded and requiring rest. I wanted to rest all the time and was never comfortable. As a caregiver, what things could you do to help Keith the most? [Sarah] Keith eventually got to the point where he needed me for many personal tasks as well as taking care of all of the home tasks. I showered him, and took over our business, and we hired a cleaning service every two weeks to try to keep the house in order. Keith really needed to know that I was there for …

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“Make memories starting now!” An interview about idiopathic pulmonary fibrosis with Kim Durand

Many of you have seen our “Spotlighted Blogger” series, where we talk with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. Well for the first time on our blog, we’re talking with a “Facebooker.” Kim started her Facebook page, Pulmonary Fibrosis Awareness, after her father passed away from idiopathic pulmonary fibrosis (IPF). She recently took some time to talk with us about her experiences with the disease and the benefits of online patient communities. Can you tell us a little about yourself and your experience with IPF? My father was diagnosed with IPF in July of 2006. He always had a chronic cough and never got it checked out until one day it got really bad and my step mom made him go get checked out. He had a chest X-ray and the doctor gave him the tentative diagnosis of IPF. Surely, the only true way to know if a person has IPF is through a lung biopsy so that’s what he had done, I believe in September of 2006. There was a complication during the biopsy. His lung collapsed and he was in the hospital for about 6 weeks. The …

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“Not in this fight alone.” An interview with multiple sclerosis patient Monica

Say ‘hello’ to Monica. Some of you may know her on PatientsLikeMe as msajstall. She was diagnosed with multiple sclerosis (MS) back in 2005 and has been a member of the PatientsLikeMe community for 6 years now. She recently took some time to talk with us about her diagnosis, finding the right healthcare coverage and the importance of connecting with others. When were you diagnosed with MS and what changes did you have to make in your daily life? I was diagnosed in January 2005 after numerous complaints about not being able to feel my legs. I noticed the sensation changes primarily when I walked up stairs. I also noticed that I had lost sensation when I used the bathroom. That particularly scared me, so I went to the hospital and stayed there for 5 days. That’s when the doctors came in and gave me the diagnosis. I was actually very scared of the diagnosis and I didn’t know much about MS at the time. The doctor did tell me that I would be in the hospital about 5 days more before he would discharge me. At that time, I was not working but I was searching for employment. After …

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“I choose hope.” Interview with Multiple Sclerosis Blogger Tricia

In our “Spotlighted Blogger” series, we’re talking with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. For our latest interview, we’re talking with Tricia who’s writing about her journey with multiple sclerosis (MS) on her blog Love My MS Life. Some of you may know her on PatientsLikeMe as jakesmama. Check out her full interview below where she talks about the impact of connecting with others and why it took 11 years to get a diagnosis. Why did you start blogging about your journey with MS and how has the community reacted? I started blogging about my journey with MS last year. I’ve had MS for over 20 years and have been an avid fundraiser, MS Champion and MS Advocate ever since. My goal was/is to share my experiences with others living with MS to hopefully inspire and encourage them, while “telling it like it is.” The reaction has been wonderful! When I hear people tell me they relate to my experiences because they “get it,” it makes me feel like I’m doing something good for others that share this disease.   In one of your posts, you mention …

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Keith & Sarah’s personal journey with rare lung disease. Part I, “Fine”

As part of our “Spotlighted Blogger” series, we’re talking with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. For our latest interview, we’re talking with Sarah and Keith. Sarah started writing about her fiancé Keith’s journey with a rare lung disease back in July of 2012 on her blog Taking a Deep Breath. In this first part of our three-part series, Keith and Sarah talk about why they started blogging, and the difficulties of finding the right diagnosis. What prompted you to start blogging about Keith’s journey and what’s the reaction been?  [Sarah] When Keith’s health took a turn for the worse in the winter of 2011, I asked him repeatedly if he would allow me to share his story, knowing that we were likely going down a very difficult road, and selfishly wanting lots of support while we (I) went down that road. He wasn’t comfortable sharing until the day we drove away from his respirologist’s office, after an appointment where the doctor said that Keith was “fine,” wasn’t a candidate for transplant, and didn’t need to be on oxygen. We knew different. I blogged, we got a second opinion, and …

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Finding Peace, Confidence and Lifelong Friends: An Interview with Psoriasis Patient Erica

Of all the psoriasis patients we’ve interviewed, Erica was hit by this highly stigmatized autoimmune condition the earliest – she developed visible symptoms at the tender age of 9.  Now 21, she shares her decade-plus journey from being the girl that people avoided in school to an increasingly confident young woman who has finally started meeting others like her, people who are also living with the daily challenges of psoriasis.  What difference has that made for her?  And how has she started to take control of her treatment course as of late?  Find out that and much more in this inspiring interview. 1. Tell us how you were treated by classmates and school nurses growing up.   The first few years were the hardest, trying to understand the disease and how it affected me. It was hard to explain to others, since they didn’t really want to listen. Most of my classmates avoided me because they were afraid they would catch it, no matter how many times I would explain it they never believed me. I was sent to the nurse a lot because I’d scratch my head or my arms till they bled. The nurses never wanted to deal …

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