6 posts from December, 2013

As 2013 winds down… Part II

Posted December 30th, 2013 by

PatientsLikeMe Employees Raising Their Hands for Rare Disease Day 2013When we kicked off 2013 back in January, we shared that what inspires everyone at PatientsLikeMe to live better is YOU. We also renewed our promise to continue putting patients first, and a couple days ago we posted on the blog about just some of  the ways the community has continued to change healthcare for good by adding their voices to real-time research and sharing personal health experiences.






In just this last year, PatientsLikeMe…

There’s even more you can check out in our newsroom too.

Also on the blog…

And last, but not least…

the PatientsLikeMe website got a makeover in November. Haven’t seen it yet? Take a short, one-minute virtual tour with Kim Goodwin, our Vice President of User Experience.

From everyone at PatientsLikeMe, thank you and Happy New Year!

As 2013 winds down… Part I

Posted December 27th, 2013 by

We wanted to take a quick look back and share how the PatientsLikeMe community has continued to change healthcare for good over the last year. Thousands of members added their voices to real-time research, all while providing support to one another and sharing about their personal health experiences. It really is a group effort, so a big shout out and thank you to everyone in the community.

Here are some highlights from 365 days of donating data, sharing experiences and learning more, together…

What were some of the hottest topics in the forums?

Who shared their story on the PatientsLikeMe blog?

More than 8,000 members donated their data to a PatientsLikeMe survey, including…

And close to 5,000 added their voices to our first ever Open Research Exchange questionnaires this year, including…

  • The Treatment Burden Questionnaire
  • The WHY STOP questionnaire on type 2 diabetes
  • A questionnaire on hypertension
  • The Perceived Medical Condition Self-Management Scale

As we move into 2014, we’re more confident than ever that the patient experience – your experience – will not only help everyone learn more about their conditions right now, but continue to change healthcare for good.

A life well lived: Giving and sharing with PatientsLikeMe member Geof

Posted December 17th, 2013 by

At PatientsLikeMe, we believe that the patient voice is what can change healthcare for good, so we’re always excited when our members take the time to talk about their personal stories with the community. This week, Geof, a PatientsLikeMe multiple sclerosis (MS) community member with a big heart and an even bigger family, shared his health journey, his philosophy on giving, and the meaning behind his username life well lived.

When were you first diagnosed with MS? What was it like? How did it impact your day-to-day life?

To be honest, when I was diagnosed, it was a relief. For months I had headaches which only went away with sleep. The worst part was having them wake me up in the middle of the night. I wanted to scream, “Body! Why are you waking me up to tell me to sleep?” Then came the dizziness, and finally the double vision. I was able to get an MRI, but I was having trouble getting an appointment with a neurologist (my primary care physician said I needed one when he ordered the MRI). The radiologist said the results could only be released to my doctor.

So naturally, after thinking about it for a day and discussing with my wife, I called up and said I needed the write-up of the results because I was changing doctors. As I read the three paragraph report, it became clear the radiologist writing up the report thought one of three things could be happening: 1) brain infection (my wife and I thought this was very unlikely as I would be much sicker), 2) Multiple Sclerosis or 3) cancer, probably testicular. If it was option 3, I was screwed, and not in a good way. The cancer would have had to spread from my groin to my head.

So we hoped for option 2, Multiple Sclerosis. Armed with the report, I went back to my primary care physician, and he started making phone calls. A week later I was in Hopkins, relieved to have MS. How many can say that?

I started treatment with Copaxone, and otherwise rejoined a normal life – well, normal for me, as we had just started fostering my daughter a couple of months earlier. I took my injections in front of her so she could learn not to fear shots. As a heart patient, she was looking forward to a long medical history, and I wanted to show her shots can be tolerated.

You mentioned you have two wonderful children – can you tell us a little about them?

On our first date, I asked my now wife how her life would be different in five years if it went as she would wish. She, being a pediatric nurse at Hopkins, said she would be a foster parent for medically fragile children. Five years after our first date and two years after getting married, we took in our first foster daughter, whom we later adopted. Her history includes five heart surgeries, a stroke, and numerous other medical incidents. We also took in a premie/shaken boy a year after our foster daughter, and we adopted him too. Finally, we took in a premie blind girl, whom we will likely adopt next year.

You say on your PatientsLikeMe profile that “life well lived” would be the title of your life’s biography – can you tell us why that is?

The title comes from a thread on a Washington Redskin’s message board that asked members what words they would use to title a book about their lives. In a moment of pure hubris, I replied “The Life Well Lived.” This thread was long before my now wife and I began fostering, and it was before MS came into my life.

After my Latin teacher in high school pulled me aside one day for a candid appraisal, I resigned myself to finding ways to make what abilities I have matter most. Ms. Pelosi told me, “Geof, I’ve taught you for three years now, and I’ve watched you play soccer for the past two. You are hardworking enough, smart enough, and athletic enough to be good at whatever you choose to do with your life, but at the highest levels, you won’t be the best.” Some might be devastated if their favorite teacher told them this, but I took it to mean I needed to find something extraordinary at which merely being good was superb. So when my now wife mentioned fostering sick kids, I thought it sounded ideal. So many kids need homes, and so many potential parents are only looking for healthy kids who look like them.

Raising kids whose medical problems sometimes puts them on the outside of society became my life well lived, using my skills in a way that matters, even if I am not the “best at the highest level.”

Now the life well lived is not the name of my biography, but it is the name of my blog (thelifewelllived.net). Of course, the life well lived is now the life enjoyed by our family rather than just mine, as my life well lived should not be one lived in isolation.

It looks like you use the tracking tools on PatientsLikeme a bunch, especially your Multiple Sclerosis Rating Scale (MSRS). How has the ability to track what’s changing impacted you and your health?

I’ve used the site for tracking a variety of things about my MS. I probably use the medication tracking the most, as it is far easier to just print and bring it to appointments rather than rely on my suspect memory.

I have used the MSRS primarily when I feel blue or my wife is lamenting the progress of my MS. It’s nice to be able to go back and say, “This isn’t new, and while I may not be as good as I once was, I’m in pretty good shape for the shape I’m in.” It is also nice to occasionally see when things have improved, and believe it or not, some symptoms have improved. Most of the time, it is a reminder my original neurologist was probably correct when he said I have aggressive MS.

If you could share anything with the MS community as a whole, what would your message be?

The more I read about any chronic illness, the more clear it seems. Those who deal best with illnesses seem to be those who find a way to give. Whether it is a kind word or a hug to a kid feeling unloved, the act of giving forces us to look beyond our illnesses, beyond all that we can no longer do, so that we can remember our value to society. So often the temptation is to fall into the “woe is me” camp, but we can be so much more. When one looks for ways to give, one is forced to look at what we can still do. This focus seems so much healthier than dwelling on what we have lost and are losing.

I have said for years I have gotten far more from my kids than I put into them. I got a reason to keep going when situations are rough. I can see their strength and draw inspiration. I can see little tricks work for them and take solace I have helped them deal with life. Giving is no zero sum game. Somehow, giving leads to both sides of our exchange ending up with more than we had before the gift.

So my advice for the MS community as a whole is find something you can still do to make somebody else’s life a little better. I know we are in the age of “Have to take care of myself first,” but how often does the concern for self lead to inward vision missing the potential gains from looking out for others?

When I posted these types of thoughts on the same board as the “title your biography” thread, I was dismissed as a hippy philanthropist. Given that I am not rich in money, I have never received such a rich compliment in my life. The irony is the giving is what allows me to deal with my MS. The giving gifts me with a happier perspective.

Can patients become innovators? Rishi Bhalerao from PatientsLikeMe speaks at TEDx Springfield 2013

Posted December 11th, 2013 by

Rishi Bhalerao, our Program Director of Client Services, recently spoke about patient innovation at the 2013 TEDx conference in Springfield, MA. Rishi talked about how the path to innovation begins right with patients because they are the ones who live with a condition day-in and day-out. Their sharing helps bridge the gap from patient to doctor to provider, and through measuring their own progress, patients can learn from each other and improve their lives together.

“Listen to your body” – PatientsLikeMe team member Maria shares her story for National Crohn’s and Colitis Awareness Week

Posted December 4th, 2013 by

Ok, we’re going to switch things up a little bit. This week (Dec. 1st-7th) is National Crohn’s Disease and Colitis Awareness Week, and besides sharing about ways you can help, we thought we’d get personal and tell Maria Lowe’s story. Maria actually works at PatientsLikeMe as part of our Health Data Integrity and Research Teams, and she’s been living with Crohn’s since she was just a kid in the 90s. Her father, David, was also diagnosed with Crohn’s back in 1980, but as you’ll read, it wasn’t an easy process for either of them.

David just visited all of us in the PatientsLikeMe office this past September, and both he and Maria shared their health journeys with the entire team so we could learn more about Crohn’s first-hand. And most recently, Maria took some time to jot down her experiences to share on the blog and help raise awareness this week. Check it out!

Can you tell the community a little about what you do at PatientsLikeMe?

I am a pharmacist, and at PatientsLikeMe, I am part of both our Health Data Integrity team and our Research team. My main role is to help provide some clinical perspective to the information in our medical database. When users of the site want to add any new information to their profile, if it’s not already in our database I will work with the user to learn more and see if we have a match (possibly with a different name), or I will help add it to the database. I also work on projects such as building new communities and get involved in some of the research work we do to offer up the perspective of a healthcare provider.

When did you experience your first symptoms of Crohn’s disease? What was the diagnosis process like?

I think I experienced my first symptoms when I was in the third grade, so I guess I was about 8 years old. All I remember was getting really intense stomachaches, and I would get them a lot. At that time, when my mom talked to my pediatrician, he just suggested that I might be lactose intolerant, so we went with that. I didn’t feel much more until 7th grade. At this point I started getting really bad stomachaches at the same time almost every day. We suspected it was something I was eating so I tried all kinds of things with changing my diet. I even gave up dairy for a whole year to see if that worked (no fun!), but it didn’t seem to change much. Finally, when I was in the 9th grade (about 14 years old by this point) I got so sick, with serious abdominal pain and fever, that my mom insisted that I be seen by a specialist. She and my father got me an appointment with my father’s gastroenterologist and he started to run some tests to see what was wrong. He didn’t think it was Crohn’s disease at first so he wanted to do some tests to rule out a lot of things first – most dealing with my female reproductive organs. Along the way I had several types of x-rays, an ultrasound, a barium test (that’s when you drink this liquid form of barium and get x-rays taken of your abdomen), and then ultimately a colonoscopy. Everything came out clear until my colonoscopy, which is what ultimately showed I had Crohn’s disease in my small intestine just before it connects to the large intestine.

Your dad also has Crohn’s disease – can you tell us a little about his experience? How has that helped you with your own journey?

My dad has had Crohn’s disease since he was about 19. He didn’t receive a diagnosis until much later in his life. As long as I’ve been alive, I’ve know that he had this condition but I learned that it took him a very long time for his doctors to figure out what was wrong with him. They never knew what to tell him and for a while he just kept getting sicker and sicker. Once they diagnosed him and started him on some real treatment, things got a little better for him. However, growing up I used to see him get sick a lot and I’ve seen him go in and out of the hospital for a number of surgeries. When I was little, this used to scare me because I would worry for him. Once my mom and dad suggested that I might also have Crohn’s, I knew that’s what it was. Getting diagnosed was scary, I was young and had just started high school, so it was a difficult adjustment for both my friends and me. But I knew I had my family to support me – my parents had been through this before and knew how to help make things better. I’m extremely lucky that they both saw the signs and symptoms and knew what it was so early. They were able to advocate for me and ensure I got the help I needed. To this day, knowing that my dad has been through this and can help provide guidance and support always makes things better. I will always call him before I call my doctors if something is wrong just to see if he has ever had the same issue I am having.

Do you have any special wisdom to share with the Crohn’s community?

I don’t know if this counts as wisdom or not, but I guess I have a couple pieces of advice for the Crohn’s community. First would be to just know that you aren’t alone. This disease is tough and it can be really embarrassing to talk about so knowing that you aren’t alone in this can be really helpful. There is still a lot out there that the doctors don’t know about what causes Crohn’s and the related complications. If you have Crohn’s and something doesn’t feel right – just keep speaking up and make sure you get the care you feel you need. It is important not to suffer in silence. Lastly, listen to your body. If it’s telling you that you’ve had enough, then it has. Sometimes that is the hardest part, just knowing when you need to give in and allow your body the time it needs to rest.

Coming together to recognize World Aids Day

Posted December 1st, 2013 by

World AIDS Day. December 1We believe that the best way to live better is by sharing real-world health experiences with each other, and today, PatientsLikeMe and aids.gov are encouraging everyone to share their own stories with HIV and AIDS. The theme of this year’s World Aids Day is “Shared Responsibility: Strengthening Results for an AIDS-Free Generation,” and you can participate by reaching out and speaking with the global HIV/AIDS community.

If you’re wondering about HIV/AIDS, did you know that…

  • Over 30 million people are living with HIV/AIDS worldwide, including over a million people in the United States1
  • Many people with HIV don’t experience any symptoms until they progress toward AIDS, and as a result…1
  • 1 in 5 Americans living with HIV/AIDS are unaware of their condition2

So, how can you do your part to raise awareness today (and beyond) and help people learn more about this condition? You can:

There are over 3,500 PatientsLikeMe members sharing their journey with HIV and AIDS in the community forums. Today, and every day, you can share your own story and help change the lives of others for good.

1 http://aids.gov/hiv-aids-basics/hiv-aids-101/global-statistics/

2 http://aids.gov/hiv-aids-basics/hiv-aids-101/statistics/