patient spotlight

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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“Stiff Lungs” -Ian’s Personal Journey from Idiopathic Pulmonary Fibrosis Diagnosis to Lung Transplant

“Short of Breath? See your Doctor,” said the poster in the pharmacy. I’d been short of breath for some time, but put it down to an unhealthy lifestyle, being 58 and being overweight. The poster encouraged me to visit my doctor, which I did. He sent me for a chest X-ray and I could tell by the reaction of the technician that he’d seen something. He discussed the X-ray with a doctor who then arranged for me to see my own doctor that afternoon. My doctor explained the X–ray had shown I had ‘stiff’ lungs and that I should see a specialist a few days later. At this point I wasn’t too concerned. I was still convinced I would be told to just exercise more and take some pills. After seeing the specialist and having more tests, he told me that I had Idiopathic Pulmonary Fibrosis (IPF) and explained what it was. He also told me that left untreated I could expect to live about another 18 months! You can imagine going home and telling this to my wife and kids. I’d never heard of it before so the first stop was the Internet. Most of the sites you visit frighten you to …

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A Good Surprise: An Interview with Fibromyalgia Member DarkAuburn

Did you know we now have more than 30,000 members in our fibromyalgia community?  In honor of this major milestone, we decided to interview DarkAuburn, who joined in 2009.  She’s a three-star member, which means she’s earned our top star rating for sharing complete, in-depth information about her fibromyalgia symptoms, treatments, quality of life and much more.  In addition, she has opted for a public profile, which means that anyone on the Internet (whether a PatientsLikeMe member or not) can learn from her detailed condition history.  Check out our interview with this veteran member below. 1. Tell us a little about the PatientsLikeMe fibromyalgia community. I was not expecting much when I found the site. I thought it would be more of an informational, non-involvement sort of site. I was surprised, as in a good surprise. I don’t know many people where I live that have fibromyalgia, and I didn’t realize how welcoming this site would be. I found people who, like me, wanted answers. The sharing of information and support was a nice thing to find. 2. What’s it like to have access to the experiences and data of tens of thousands of other fibromyalgia patients? It’s staggering. I …

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Happy Thanksgiving! PatientsLikeMe MS Patient Spotlight: FeliciOlivar

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview one patient each month to find out more about how he or she approaches life. This month we are pleased to feature FeliciOlivar, a two-star member. 1. What are you thankful for? I am thankful for being able to walk. That was my worst flare of them all. I woke up one morning and fell right down to the floor. As devastated as I was that my worst fear had come to be, I didn’t let anyone know that I was petrified at not being able to walk or do anything for myself. It was a horrible time for me, but I was determined that I was going to be able to walk again. I’m glad that I can walk even if I do still trip over my own feet. I’m also thankful for the family that stood behind me through that tough time. 2. What do you have in abundance in your life? I have laughter. If you cannot laugh at yourself, then what are you going to do? I laugh at myself all the time, if I don’t …

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PatientsLikeMe MS Patient Spotlight: jtjackson

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview one member each month to find out more about how he or she approaches life. This month we are pleased to feature jtjackson, a two-star member. What is your favorite time of the day? My favorite time of day is the morning, about a half hour after being up (between 6:30 and 7:30 a.m.), having my first cup coffee and thinking about what I can do today. I always have so much energy at this time and feel like I can conquer the world. Usually, reality sets in about 11 a.m. that I really do have MS and I need to slow down and rest (due to fatigue) so I am able to function enough to do the easy stuff. What makes you laugh? My two daughters (ages 27 and 17) really make me laugh (belly laugh) when they get to talking about themselves, their lives, people they’ve met – they literally do impressions of all kinds of people, from the abled to the disabled (they call them and me the “special” people), and watching them do their thing really …

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PatientsLikeMe ALS Patient Spotlight: swhite.geo

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview a PALS each month to find out more about how he or she approaches life. This month we are pleased to feature swhite.geo, a two-star member. What are your interests and hobbies? Since my diagnosis, I enjoy helping others newly diagnosed and getting them on the right track. Then there’s the technological side; I’m always scouring the net for the next gizmo to help me overcome the challenge of life with ALS and keeping that glass half full. Being from Fayetteville, North Carolina, it’s hard not to mention the military, ACC basketball and summer trips to the beach, the mountains and Carowinds. But ALS certainly puts its own twist into all aspects of what we previously called life. For instance, my love for getting out and hitting that little white golf ball around has transformed into just being able to watch Tiger win another tournament. Other interests have been gardening, racquetball, tennis, beach volleyball, tinkering with the cars and going to any live sports event or concert. I’m also taking full advantage of the free movie admittance at the local …

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PatientsLikeMe ALS Patient Spotlight: thornbal

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview a PALS each month to find out more about how he or she approaches life. This month we are pleased to feature thornbal, a two-star member. Where do you find joy? I find joy in my family and friends, especially my two daughters. I have really enjoyed every day this summer with my daughters home on break from school! We all enjoyed reading the latest Harry Potter book! Also, I find joy in everyday things like reading the chat board on PatientsLikeMe and watching my favorite soap opera General Hospital (one thing about a soap opera… it is never a repeat! LOL). During the school year when my daughters are at school and my husband is at work, I always enjoy watching movies, television shows, and reading books… all online. And, there’s always Starbucks! Or just looking out my computer room window at my little flower garden, watching the birds and listening to all the sounds of nature. What person do you admire most? I don’t think there is any one person I admire most. I admire everyone living with …

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PatientsLikeMe MS Patient Spotlight: Joy

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview one member each month to find out more about how he or she approaches life. This month we are pleased to feature Joy, a one-star member. What inspires you? Everything inspires me. The very scale of life rocks and sways me. A sunset inspires me to find more color in my own life. A bird in flight invites me to find more easy joy and laughter. A tree inspires me to appreciate my roots and my ability to bend to survive and to realize that I only grow more beautiful with age. A flower inspires in me a consciousness of just how beautiful and fragile life can be. My granddaughter inspires in me a belief in the mystery of creation. And my dad inspires in me a belief in myself. My mother inspires in me strength and endurance. And my husband inspires in me a desire to love most deeply. My soul sister inspires in me a genuine and profound trust. My son inspires in me a purpose and reason in life. And my dogs inspire in me a desire …

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PatientsLikeMe ALS Patient Spotlight: Bwana

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview a PALS each month to find out more about how he or she approaches life. This month we are pleased to feature Bwana a two-star member. What is your favorite time of day? My favorite time of day is late in the evening. I sit in my garden and listen to the sounds of nature and look into the sky and think about so many things. What makes you laugh? When I was diagnosed with ALS right before Christmas, my daughter-in-law gave me a baby book, and the title is “ALL ABOUT ME.” In this book, I can write stories of growing up and put photographs, and I’ve even put some DVDs of my favorite music, anything that would help my unborn grandchild know what kind of person I am or was. One of the stories was about my two brothers and myself. We had a cemetery behind our house that we used to play in, and one Mother’s Day, we had no money, so we took a bouquet of flowers off one of the graves and gave it to …

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