Team of Advisors

Meet Doug from the PatientsLikeMe Team of Advisors

We’d like to introduce you to Doug, another member of your 2015-2016 Team of Advisors. Doug is an actor, teacher and writer living with major depressive disorder (MDD). He’s been tracking his health on PatientsLikeMe since 2008. Doug feels there is a lot of stigma surrounding the term “mental illness,” and shares that one of his biggest challenges has been opening up about his depression. He believes that MDD isn’t talked about enough in society: “We’ve got to figure out how to encourage the sensitivity and understanding.” Here, Doug describes a vivid picture of what it’s like to live with depression and offers some advice to other patients: Find others living with your condition, and know that you’re not alone. What gives you the greatest joy and puts a smile on your face? My kids, their antics and achievements, their growth, even their mistakes, are what get me up in the morning. Drawing closer to seeing or speaking with them is probably my greatest motivator. It’s funny, though; I wouldn’t label what they bring as ‘joy,’ per se. When you’re living with chronic Major Depressive Disorder, and when you’re treated with an affect-flattening medication like lithium, joy all but falls …

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Meet Peggy from the PatientsLikeMe Team of Advisors

Say hello to Peggy, another member of your 2015-2016 PatientsLikeMe Team of Advisors. A survivor of both kidney cancer and Stage II breast cancer, Peggy believes that most of us are “ill-prepared to be ill,” and that better health education can lead to better outcomes. After years of teaching and volunteering, patient advocacy has come naturally to Peggy. She’s determined to teach others about their treatment options, and writes a blog covering new studies. Her goal is to empower patients to approach their doctors with more confidence. Here, Peggy touches on how she overcame survivor’s guilt and the challenges of navigating the healthcare system. What gives you the greatest joy and puts a smile on your face? In front of me is a bulletin board of picture, heavily featuring my two young grandchildren and a few of my own five children. The sheer joy of seeing my family grow up is in sharp contrast to the realization I could have missed it all, had I not had excellent care of my kidney cancer. In gratitude for what had been given me, and in appreciation for the sacrifices others had made, I am determined to teach others about their kidney cancer …

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Meet David from the PatientsLikeMe Team of Advisors

We’d like to introduce you to David, another member of your 2015-2016 PatientsLikeMe Team of Advisors. David has been living with Stage IV lung cancer for four years and hopes to be an inspiration to other cancer patients. He has worked to raise awareness for his condition as a political advocate for the NGO Lung Cancer Alliance. And as a retiree, he stays active by cycling, gardening and baking bread. Here, David stresses the importance of forging a strong partnership with his care team and reflects on what he calls “some of the best years of my life.” What gives you the greatest joy and puts a smile on your face? Knowing at the end of a day that my time was spent wisely and productively. To me this means, like any other person, I have accomplished one or more tasks that are important to me. As a retiree each accomplishment mostly orbits around my avocations that include (1) road cycling (2) gardening or working in my greenhouse (3) baking artisan bread (4) photography and (5) traveling. Each avocation reinforces my emotional well-being and belief that despite having a terminal disease (Stage IV Lung Cancer) I can live like any …

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Meet Jeff from the PatientsLikeMe Team of Advisors

Say hello to Jeff, another member of your 2015-2016 PatientsLikeMe Team of Advisors. Since he was diagnosed with Parkinson’s disease (PD) 20 years ago, Jeff does his best to stay active—in both exercise and advocacy. Keeping up with his two teenage daughters is challenging enough, but when he’s up to it, Jeff also golfs, plays tennis and practices Tae Kwon Do (he’s a 3rd Degree Black Belt). And as an advocate for PD education, he’s participated in a panel discussion sponsored by Beth Israel and Deaconess Hospitals and given a presentation at Harvard Medical School. Here, Jeff opens up about his biggest frustrations and encourages other patients to stay active and engaged. What gives you the greatest joy and puts a smile on your face? I have always enjoyed living life day by day and not taking myself too seriously. I believe that there many things that can be serious (i.e., health conditions, living conditions, world economics are a few), but people’s basic construct should be less serious. For example, watching my two daughters enjoy daily life at home puts a smile on my face. What has been your greatest obstacle living with your condition, and what societal shifts do …

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Meet Craig from the PatientsLikeMe Team of Advisors

We recently sat down with Craig, one of your 2015-2016 PatientsLikeMe Team of Advisors. Craig is living with fibromyalgia and severe degenerative disc disease, the result of a serious car accident in 1978. Craig is active on PatientsLikeMe and other online communities, where he adds his voice to discussions about chronic pain, healthy living and LGBTQ issues. He’s also written essays to raise awareness about life with fibromyalgia, a “hidden disability” he feels is commonly misunderstood. In this interview, Craig shares how important it is to have a community he can turn to for support and to remind him he’s not alone. What gives you the greatest joy and puts a smile on your face? It’s a mixture of both smiles and sadness when I think of my greatest joys. I tragically lost my mother in a traffic accident when I was 19 years old. We had started a conversation the week before where I was trying to “come out” to her (that I was gay). I procrastinated and when she asked if I was, I said I wasn’t sure, that I was working on that answer, and that I’d tell her more next week. Well that conversation never happened, …

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Meet John from the PatientsLikeMe Team of Advisors

We’d like to introduce you to John, another member of your 2015-2016 PatientsLikeMe Team of Advisors. Shortly after being diagnosed with ALS in January 2014, John decided to retire from his 37-year career in IT. His new focus? Learning everything he possibly can about his condition — and plenty of fishing. Fueled by what he calls his “zeal for knowledge” about ALS, John has been proactive in researching programs and clinical trials that might benefit him. He’s already participated in studies at Massachusetts General Hospital, the ALS Therapy Development Institute, and Bronx VA Medical Center. Here, John talks about the importance of being his own advocate and shares some advice for newly diagnosed patients: Keep asking questions! What gives you the greatest joy and puts a smile on your face? I have a passion for fishing and then cooking dinner for my family and friends who like seafood. 2 hours from catching to dinner table is what I call fresh fish. Dinner usually starts with a glass of wine and fishing tales of the whopper that got away. What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that …

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Christel’s story

Last month, we introduced Christel, a member of your 2015-2016 Team of Advisors living with type 1 diabetes. Here she talks about the important role peer support has played in her journey. Here’s her story:   You can see how much good data can do. During the month of December, we’re celebrating #24DaysofGiving. Any data you share on the site will go toward a donation of up to $20,000 by PatientsLikeMe to Make-A-Wish Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.     Data for you. For others. For good. Share this post on Twitter and help spread the word.

Gus’s story

Last month, we introduced Gus, a member of your 2015-2016 Team of Advisors living with ALS. Here he talks about his hope that the data he donates will help not just one person – but many. Here’s more of his story:   You can see how much good data can do. During the month of December, we’re celebrating #24DaysofGiving. Any data you share on the site will go toward a donation of up to $20,000 by PatientsLikeMe to Make-A-Wish Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.         Data for you. For others. For good. Share this post on Twitter and help spread the word.

Allison’s story

Last month we introduced Allison, a member of your 2015-2016 Team of Advisors living with bipolar II. She recently opened up in a video about how sharing her data on the site helped her recognize when she might have an episode, and partner better with her doctor to prevent new episodes from happening. You can see how much good data can do. During the month of December, we’re celebrating #24DaysofGiving. Any data you share on the site will go toward a donation of up to $20,000 by PatientsLikeMe to Make-A-Wish Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children. Data for you. For others. For good.     Share this post on Twitter and help spread the word.

Meet Christel from the PatientsLikeMe Team of Advisors

We wanted to take a minute to introduce you to Christel, one of your 2015-2016 PatientsLikeMe Team of Advisors. Christel who was 12 years old when she was diagnosed with type 1 diabetes, shares openly that she spent a lot of her teens and twenties ignoring its existence. But 32 years later, Christel has made peer support and advocacy her focus. She’s founded a psychosocial peer support conference for adults with diabetes (and caregivers, too) and co-founded an advocacy organization for easy and effective diabetes policy advocacy. Christel also writes a popular patient blog, ThePerfectD.com, and speaks publicly about her experiences. In a recent interview (below) she talks about societal stigmas surrounding diabetes and how important it is to connect with others who share this condition. What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges? Society thinks that diabetes is a punchline; something that shouldn’t be taken seriously. We need to stop making fun of diabetes. All those pictures of desserts with the hashtag #diabetes? People with diabetes aren’t laughing. In fact, it only perpetuates the ignorance. Those who …

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