17 posts from May, 2013

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

Posted May 22nd, 2013 by

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.

S-K 2

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 him. I made lots of special food for him because he needed to gain weight in order to be active on the transplant list.

How did you connect with other transplant patients and why did that help?
[Sarah & Keith] From the beginning, we began to seek out others who had received lung transplants. We found one in our town and eventually met many others through our many visits to the hospital. The lung transplant “family” is a tight one and it really helped to have others to talk to who were waiting, as well as those who had received their transplants and could offer hope and advice. Facebook became a good way to find people through other friends from the hospital, and eventually we developed a close group of “lungies” that we keep in touch with.

Besides PatientsLikeMe, what would you suggest to others patients who are trying to connect with someone like them?[Sarah & Keith] Finding groups on Facebook that relate to organ donation / transplant and beginning conversations with others is a great way to find people. Starting your own Facebook group or blog to raise awareness about your situation is another excellent way to let people find you.

Sarah and Keith are part of our “Spotlighted Blogger” series, where we talk with people who are sharing their personal health experiences to help raise awareness and change healthcare for good. Sarah started blogging about her fiancé Keith’s journey with a rare lung disease back in July of 2012 on her blog Taking a Deep Breath.

 


International Clinical Trials Day: Raising awareness and forging new partnerships

Posted May 20th, 2013 by

Did you know that May 20th was chosen for International Clinical Trials Day because it’s the same day James Lind began his trial on scurvy? When it comes to drug development, clinical trials are an essential way to get direct feedback from patients. That’s why PatientsLikeMe is developing new tools and forging new partnerships.

Trials map

We’ve just finished work on our new Clinical Trials Tool. Just like before, you can search for trials by age, gender and condition. But now, we’ve also built an interactive map that shows exactly where trials you might be eligible for are located, anywhere in the world. It’s faster and easier than ever to find the right trial for you, right in your own neighborhood.

We’ve also just announced that we’re teaming up with Sanofi and the Center for Information & Study on Clinical Research Participation (CISCRP) to better enable you, the patient, to get involved with clinical trials. By combining the strengths of an online patient community, a pharmaceutical company and an educational organization, we’ll be better able to raise awareness and accelerate the drug development process. And for patients with life threatening diseases, speeding up this process is even more critical. You can check out more about the new partnership here.