12 posts from May, 2012

Someone Like Me

Posted May 25th, 2012 by

We are pleased to present a guest post by PatientsLikeMe member Jasmine (Jazz1982), who was diagnosed with multiple sclerosis (MS) in her mid-twenties.  Don’t miss this beautiful essay about the commonalities between all patients who have lost functionality – regardless of how different their conditions might seem.

I recently met someone that happened to be just like me but not in the way that I expected. I’m currently doing my master’s thesis and was interviewing an occupational therapist who had had a stroke herself. Her name is Lena, she’s 55 years old and not only has she had one stroke, but four of them. You might think this had made her “disabled,” but as with a lot of people I meet that have a chronic illness, it has only enabled her even further and made her more determined. The interview was supposed to last a maximum of 30 minutes but lasted three hours. We just couldn’t stop talking.

MS Patient and Guest Author Jasmine (Jazz1982)

At this point I think I should introduce myself. My name is Jasmine, I’m 29 years old and I have multiple sclerosis (MS). To a layman’s ears, this would mean that on a random basis I lose one or more functionalities, and with medication, I might gain one or more functions back or maybe not. I’ve been one of the lucky ones, and I’ve gained almost all functionality back. A big thank you to my neurologist and rehabilitation team for helping me reach this point, and it’s a very happy point.

I’ve always been on the look out for someone just like me, give or take a few symptoms, only I was never been able to find that certain someone. That is, until Lena. I can’t say for sure how it all started but we started asking about each others’ symptoms, and I found out that she was on an MS drug for fatigue. This at first took me by surprise, an MS drug used for people who’ve had a stroke? What is this black magic that she speaks of? She went onto say that it has worked wonders for her and has made it possible for her to continue working. Then it hit me like a meteor:  we might have different labels that cause our symptoms, but what difference does it make if I’m fatigued or she is? It’s all listed under the category of fatigue, and if the medicine works for me, why not for her?

The more we shared, the more fascinating the other became. We first started off with similar symptoms and then diverged into our more “unique” ones and between the both of us there were a couple of doozies! I’ll give one of mine as an example – a time came where I could not recognize faces and explaining that to people was an impossible task as they could not relate to it so I simply avoided people altogether. She has never been through it, but the basic understanding of losing a functionality that is invisible to everyone else but you is a loss that once experienced makes it familiar. Basically, monkey suffers, monkey feels.

The repercussions of this had a larger than life effect on me and saved me many a session on the therapist’s couch. Amazingly, through the exchange of our uniquely individual symptoms that were incomprehensible to the rest of the world, and after years of feeling like an outsider, I suddenly felt “normal.” Imagine that, me normal!

I’ve always been the outsider, and now I suddenly felt like I wasn’t alone.

We have this idea that only someone that has the same disease knows what we’re going through, and I can not find that to be true anymore. I believe that we are on this Earth to connect with one another, despite age, color, race or disease. Being sick is merely another factor added to the matrix of connecting with others. We’re all people bringing our unique mix of genes, environment and strategies to the table of life. It sounds like it makes things more complicated, but to me, it has widened my net and simplified things. I don’t need to categorize and filter people and go through a checklist. All of that melts away into one question: “Does he/she get it?'” Simple, tried and tested on many a person, and I would highly recommend you try it as well.

So, the take-home message would be: talk to others. They don’t have to have the same disease to know what you’re going through, they just need the basics and the understanding. And I know that everyone out there can find someone out there that is just like you. Happy hunting!

These words are dedicated to Lena, thank you!

A big thanks to Jasmine for sharing her poignant revelation with all of us.  Stay tuned for more guest posts by our amazing patients!


Free Up Research! On Our Way to 25,000 Signatures

Posted May 23rd, 2012 by

Have you heard about the petition launched to the White House asking for all federally funded research to be freely accessible over the Internet? We’ve signed it and here’s why…

Today, government-funded research (that’s research paid for with your tax dollars) is often something you can have access to in published scientific journals, but for a charge.  The petition is a call to action for the current Administration to make this research open to anyone who wants to read it — study participants, other patients, researchers, healthcare providers, industry, students, or anyone at all.

"We the People" Allows You to Send Petitions Directly to the White House

Under the Administration’s new “We the People” policy, if the petition gets over 25,000 signatures within 30 days, the White House will issue a response. At the end of day two, there are already over 10,000 signatures! (Anyone can sign, even those internationally.)  You can read more about this open access movement and see what others are saying with the twitter hashtag #OAMonday.

Simply put, we believe this campaign represents the power of Openness. At PatientsLikeMe we’ve long believed in the power of open access and take steps to ensure many of our publications such as our recent epilepsy user survey, our lithium study in Nature Biotechnology, and most of our other published research is all freely available without needing to be an academic researcher. Why? Because patients like you want to read the most up-to-date scientific research and we believe you have the right to do so without impediment.

So, we’ve signed the petition.  Have you?


The buzz around the office…

“In the UK, there’s a saying that e-patients have about their healthcare decisions: ‘Nothing about me, without me.’ There’s no better example of the disconnect between academic medicine and patients than a research study *about* patients that they can not read.”
– Paul Wicks, PhD, R&D Director, PatientsLikeMe (Signature #817)

“We call on patients, caregivers, family, and friends to sign this petition and send a clear message that life-saving research paid for with tax dollars is a public good and should be shared in the same spirit with which altruistic patients like you sacrificed their time, wellbeing, and sometimes even their lives.”
– Ben Heywood, President and Co-founder, PatientsLikeMe (Signature #4473)

“Some issues transcend politics and this is one of those.  When you are sitting in a hospital trying to make a decision about yourself or a loved one, we believe you should not have to pay to access government-funded research results that could help you.  Science is not done for universities or for scientists; it is done to better our understanding of medicine and disease to help you the patient.  This research belongs to the public, to the patients who made it happen by volunteering and funding it with their tax dollars.”
–  Jamie Heywood, Co-founder, PatientsLikeMe (Signature #11646)