patient interview

Learning Your Personal Genetics: An Interview with PGen Study Participant PF Anderson

Recently, PatientsLikeMe sent a message to our members about an opportunity to participate in the Impact of Personal Genomics (PGen) Study, led by researchers at Harvard and the University of Michigan.  Each of the 1,000 study participants receives personal genomic testing services at a significantly subsidized discount.  Using a series of surveys, the investigators will then look at the risks and benefits of learning this information.  What, for example, will participants do with their discoveries?  Will they make health behavior changes?  Will they tell anyone – and if so, who? PatientsLikeMe member PF Anderson decided to not only join the study, which has now reached its maximum enrollment, but to also start a blog about her experience.  Find out why and much more in our interview below. 1.  What led you to participate in the PGen study? The “why,” for me, had three main drivers. First, I’ve been ill for over a decade, and only recently tracked it down to what appears to be celiac disease, but all the blood tests have come back negative for both celiac and gluten-intolerance or wheat allergy. Second, I am both a medical librarian and an emerging technologies librarian. I firmly believe in supporting …

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Spotlighted Blogger: Meet Psoriasis Patient Joni of “Just a Girl with Spots”

Welcome to the latest installment of our “Spotlighted Blogger” series.  This spring we’ve been focusing on psoriasis patient bloggers, starting with Lissa in March and Alisha B. and Jessica in April. Today, we’d like to introduce you to Joni (girlwithspots), a PatientsLikeMe member who writes a blog called “Just a Girl with Spots.”  How has she found acceptance with this chronic skin condition (which can cause itching, rashes and plaques) as well as the courage to wear a bathing suit?  Check out our interview below. 1.  Tell us about being diagnosed with psoriasis. My diagnosis at age 15 was frustrating and dramatic. I was already super awkward – tall and lanky with a mouth full of braces – so to me it was the end of the world. The spots seemed to come on overnight and they took control of my skin. I felt self conscious and ugly all of the time. Even the word psoriasis felt ugly to me. I wasn’t comfortable talking about my skin condition to even the closest of friends. My friends and family knew that I had psoriasis, but not any of the emotions and stresses that I felt as a result of it. At …

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Living with Psoriasis: PatientsLikeMe Member Lissa Featured on Patient Power

“I don’t really know too many people around here with psoriasis.   It was hard to relate with somebody.  My family, my friends, my husband, they’re great support, but they can only see what I’m going through, they can’t go through it the way I do.  It’s really important to be able to connect with people who truly understand what you’re going through.” – Psoriasis Patient Lissa In March, we introduced you to Lissa, a psoriasis patient who had recently started blogging about life with this chronic skin condition.  At that time, she had begun UVB photo therapy treatment for her psoriasis. Now, several months later, you can see how Lissa is doing after completing her 51st UVB photo therapy session – and how PatientsLikeMe continues to play a role in her wellbeing – in a Skype video interview with our partner Patient Power, a site dedicated to connecting you with the experts on your condition.  That means doctors and patients. Lissa Conger: Managing Psoriasis and Harnessing the Power of Patient Communities from Patient Power® on Vimeo. Check out Lissa’s engaging interview with Patient Power founder Andrew Shorr, a leukemia survivor, above.  And stay tuned for more Patient Power videos featuring …

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Spotlighted Blogger: Meet Jessica of “Jessica and Psoriasis”

Welcome to the latest installment of our “Spotlighted Blogger” series.  This spring we are focusing on psoriasis patient bloggers, starting with Lissa back in March and Alisha B. a few weeks ago. Today, we’d like to introduce you to Jessica Gough, a 19-year-old from the UK who recently started a blog called Jessica and Psoriasis.  What kind of reaction has she gotten?  And what tips does she have for those who feel isolated due to this chronic skin condition, which can cause itching, rashes and plaques (scaly patches)?  Check out our interview below. 1.  How are you feeling about being a newly minted “psoriasis blogger”? The best word to describe how I feel about being a psoriasis blogger is relieved. I chose relieved because there is so much I have experienced throughout my psoriasis journey – both positives and negatives – that I wanted to talk about that even my closest friends and family were unaware of.  By writing my blog I have been able to explain all of my experiences without having to face the challenges of approaching the subject in general conversation. I have also found that by using my blog to share my journey with psoriasis it …

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Recognizing Breast Cancer Awareness Month

Have you been seeing pink this month – such as on the lids of your Yoplait yogurt? That’s because it’s National Breast Cancer Awareness Month, a partnership of numerous organizations working together to promote breast cancer awareness, share information on the disease and provide greater access to screening services. Here at PatientsLikeMe, we have 147 patients reporting breast cancer as well as 10 patients reporting inflammatory breast cancer (IBC), a rare but very aggressive form of the disease. Notably, 93% of our breast cancer patients are female, and 7% of them are male. (Although breast cancer primarily occurs in women, it can occur in men too, with approximately 1,910 new cases per year in the US for men.) Given that breast cancer is the second most common form of cancer for women (after skin cancer), we know there are many more breast cancer patients and survivors out there than our membership numbers show. That’s why we encourage anyone affected by breast cancer to join PatientsLikeMe and share your treatment data to help others. For example, what was your experience with radiation or lumpectomy? What tips would you give other patients? These are the types of invaluable data points you can …

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Mood Patient Interview: How Far I’ve Come

We continue our series from last week of getting to you the person, not just the “patient.” Here’s an interview with member “Bradley25,” a member of our PatientsLikeMe Mood Community who was interviewed for our January newsletter.   Read on to learn more about how comparing his condition over time has helped give him hope as well as his goals for 2011 .  Enjoy! * * * (Amy) Where do you find hope? (bradley25) I find hope when I look at my continued progress. When I look back and compare the severity of my condition over the years, I am amazed at how far I have come. Fifteen years ago, my life was a complete wreck. I was in and out of the hospital and had trouble holding a job for more than a few months. Ten years ago, I had many of the same problems but life was improving from a treatment plan that I held. Within the last five years, I have found a good doctor and am properly medicated. Although life isn’t perfect today, bipolar disorder no longer controls my life, and I find it interferes less and less with my job, social life and daily routine. …

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Mental Health Awareness: Interview with Mood Community Member, Marathoner452

Last week was Mental Illness Awareness Week.  Did you know there are more than 18,000 patients in the PatientsLikeMe Mood Community?  Stay tuned for another blog tomorrow with some interesting tidbits about this community.  To warm us up, here is a recent newsletter interview we did with three-star member  – marathoner452.  Read on to find out what she recently told our very own Amy Morton about what brings her joy, returning to teaching, and what she has learned from the PatientsLikeMe Mood Map. * * * (Amy) What brings you joy? (Marathoner452) My two-year-old niece and four-month-old nephew make me so happy. During my most recent depression, my niece and her parents (my nephew wasn’t born yet) lived at my house and just waking up in the morning and knowing that as soon as I made it downstairs she’d be chanting my name and wanting to sit on my lap at breakfast and pop the bubbles in my cereal was enough of a reason to live another day. You don’t remember much from when you’re almost two-years-old.  I wanted her to remember me.  When she gets old enough to understand, I intend to tell her how she helped save my …

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An Interview with DannyD to Kick-Off ALS Awareness Month

It’s ALS Awareness Month!  Did you know there are more than 4,500 patients with ALS (PALS) in PatientsLikeMe’s flagship community?  We’ll be updating you all month on what is being learned by and from our PALS, so stay tuned.  To kick us off, here is an interview with one of our long-time, three-star members  – DannyD.  Read on to find out what he recently told our very own Amy Morton about living with hope, making resolutions, being impulsive, and learning from PatientsLikeMe. * * * (Amy) What gives you hope? (DannyD) People give me hope. I know there is an army of people and organizations out there working to cure ALS while continually finding ways to maintain quality of life until there is a cure. Even in these tough economic times, people are still giving of themselves, whether it is their time and/or money. I even saw somebody with a tab open, reading an Opploans.com review, considering taking out a loan to donate. Moreover, I think in the last 10 years we’ve made more progress into understanding ALS than we’ve made in the previous 100+ years, and as my disease process is progressing very slowly, I’m optimistic that I will …

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