2 posts tagged “patient connections”

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

Posted March 27th, 2013 by

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.

Erica Psoriasis Patient CROPPED

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 with it so they sent me home. Now that I’m older and can explain it better, I don’t have as many problems. If someone stares at my skin, I simply tell them it’s psoriasis and it’s not contagious. But the hardest thing I had to go through was people avoiding physical contact with me.

2. How important is it to find the right dermatologist? You’ve said yours is like a second mother.

I’ve known Dr. Clifton since I was 13 years old, and I’m 21 now. It’s very important to have that great relationship with your doctor. They need to know every single little detail of your life when you have a serious disease such as psoriasis, as so many things can cause it to get worse or better and can react with the medications. You need to know that they will listen to you and take the time you need. You also need to trust them with your life. The last time I saw Dr. Clifton after three years, I had changed, however, and I didn’t agree with the treatment course she wanted to do. I respect her advice but I don’t agree with her [at this point], so therefore I’ve decided I want to find a different dermatologist.

3. What’s helped you develop the confidence and love of life you have now?

I still have days where I feel depressed but I’m lucky enough to be surrounded by amazing supportive people in my life. God is the main reason I overcame the depression. I pray a lot! I also read my Bible, listen to Christian music (Skillet is my favorite band!), talk to someone and change my way of thinking. When I feel sad or upset I’ll look up Skillet on the laptop and just play it as loud as I can and just breathe. I always feel better after that. I go to an amazing church that has some awesome people in it. I know I can call or text any of them any time and they will be there for me. If I’m focusing on the bad, I try to look at the bright side of things and that seems to help as well. But praying is by far the thing that makes me feel best and at peace.

4. What’s it been like to connect with other psoriasis patients at PatientsLikeMe

Growing up with psoriasis, and having no one else around with it, was extremely hard. I had no one to connect with. But since being on the site, I’ve made some great connections and have made some lifelong friends. The strange thing is how much we have in common and how many of the same things we’ve been through. What’s awesome is being able to tell someone what’s going on with my skin and they really understand because they’ve been through the same thing. In the past nine months, I’ve also met a lot of people in person with psoriasis and I’m always telling them about this site!


How to Thrive: Takeaways from TEDx Cambridge

Posted November 30th, 2011 by

Patient Experience Manager Kate Brigham and I attended TEDx Cambridge last week, a one-day event full of thought-provoking and inspirational talks about Ideas Worth Spreading (TED’s mission). The participants didn’t want to just survive, they wanted to Thrive, which was this year’s theme. Speakers, including our President and Co-Founder Ben Heywood, enlightened the crowd with how we can help ourselves in small ways and inspire others in the process.

The Entrance to TEDx Cambridge 2011

Throughout four sessions packed with 30+ speakers on the topics of Mind, Body, We, and Beyond, many shared how people can improve themselves individually, by being part of a community, and by giving back to others. Some advice is expected—sleep more, drink less caffeine, eat more vegetables, try yoga—but other points were more novel.

For example, we were encouraged by Matt Daniell to try something, anything, for a month as “time becomes much more memorable when undertaking 30 day challenges.” Using research on the effects of body posture on hormones, Amy Cuddy shared that doing a power pose for just a few minutes (like putting your feet up on your desk) is minimal effort, but can benefit your brain as well as others’ perception of you. (Note: she recommended we put our feet up in private, not in a meeting!) One of the lessons that seemed to resonate most was from Priya Parker, who encouraged the audience to not worry about keeping all options open—that it’s FOMO (the fear of missing out) and FOBO (the fear of better opportunities) that contribute to many people’s anxiety and stress.

PatientsLikeMe President and TEDx Speaker Ben Heywood (Center) Along with Brothers Jamie Heywood (Left) and Stephen Heywood (Right), Whose ALS Diagnosis Inspired the Creation of PatientsLikeMe

In addition to Ben talking about PatientsLikeMe, other speakers shared the importance of connecting people with others like them, making data more accessible and empowering patients to take control of their health. Greg Epstein and Jesus Gerena, although in different fields (a Humanist Chaplain and Activist, respectively) arrived at the same conclusion: that when people come together and help one another, the entire group is empowered and everyone benefits.

Our ears also perked up when Sandy Pentland, a social scientist at MIT, discussed how important data is and stated that “personal data is the new oil of the Internet.” Further affirming the importance of data, John Sheffield talked about how he wants to make sure that genomics analysis is accessible, repeatable and shareable. He’s found in his field of data architecture that’s it’s all about connections with others, a point of view we certainly share!

Heart Patient and TEDx Speaker Hugo Campos

One story that perhaps applies most to what we’re doing here at PatientsLikeMe was presented by Hugo Campos, a heart patient who is literally on a quest to liberate data from his own heart. Although he has a high-tech cardiac defibrillator, he doesn’t have access to the data collected by this device. We’re with you, Hugo: “We all have the right to our own health information!”

At PatientsLikeMe, we help people Thrive by connecting patients so that they can share their experiences, find others like them and, together, learn how to best improve their health. From disease-specific outcome scores to our Quality of Life survey and InstantMe tool, we offer all sorts of ways to monitor your health and assess the impact of various treatments and interventions.

How do you help yourself and others Thrive? Share your thoughts in the comments section.  Also, check out the video of Ben’s talk.

PatientsLikeMe member emorgan