A native of Glasgow, Scotland, Graham Steel is a longtime “Guest Researcher Member” of PatientsLikeMe.  Following the death of his brother Richard at the age of 33 from a rare condition known as variant Creutzfeldt-Jakob Disease (vCJD), Graham became involved in patient advocacy work, and most recently, in lobbying for open access to published scientific research.  Find out how this active blogger and Tweeter developed a passion for data sharing in our interview below.

1.  Tell us how you first got involved in patient advocacy work.

As per my PatientsLikeMe profile, this started in 2001. Two years after the loss of my only sibling to vCJD, I was approached by a UK organization called the Human BSE Foundation to act as their Vice-Chair. Quite a daunting task for a 33-year-old!! I was involved in that capacity until 2005. Over the years, my interests in science and information sharing to this day continue to diversify.

I’m a great believer in complete openness and transparency as anyone who knows me in real life or via the Internet knows. One of my key assets seems to be “connecting people,” something that I started doing at the age of four. I enjoy making new connections and this is made so much easier with the advent of the web.

2.  You’ve been a member of PatientsLikeMe since 2007.  What key changes have you seen the site go through in that time?

I am not 100% sure where I first found out about PatientsLikeMe but it was most probably via the main ALS TDI Forum. I’m not a “regular” PatientsLikeMe forum poster with only 197 posts since February 2007. Some key changes that spring to mind: the addition of a PatientsLikeMe blog was a great development. A couple of years ago, a “Share This” button was added to the blog making it much, much easier to share content via social networking sites, etc.

The PatientsLikeMe platform itself has expanded in many ways since 2007. At that time, if I recall correctly, ALS/MND was the only disease covered. Now, that has increased to >1,200 conditions, so that alone is a major development. New features get rolled out on a regular basis and they are accompanied with good and clear explanations. It’s also much easier to ‘drill down’ to/for specific content, and the site is generally simpler to navigate than back in 2007, IMHO.

3.  You have recently campaigned for open access publishing. Why is this important to patients?

Yes, as of late 2006, I stumbled upon my first Open Access (OA) Manuscript, as it happened via Public Library of Science Pathogens. Up until that point, I had assumed that ALL Scientific, Technical & Medical (STM) content was locked up behind paywalls. As such, it was very enlightening to discover an alternative to traditional publishing. As matters stand though, only ~15% of Peer Reviewed STM Manuscripts are OA, and subscription-based publishing is still “the norm.” The reason that I became part of the OA Community was to use my networking skills to make more people aware of and involved in OA. OA itself however is just one cog (but a significant one) in the wheel of Open Science!!

“Why is OA important to patients?” Where does one start?! One of the best recent responses to that question comes from PatientsLikeMe’s very own Dr. Paul Wicks with his guest post over at the Public Library of Science Blogs dated June 14th, 2012, and entitled “Open Access Is Not For Scientists. It’s For Patients.”

Two key sections of that post that stood out for myself most were:

“In the past six years, we’ve found that more and more patients are trying to access research studies written about them, including studies where they were participants. In addition, they are increasingly capable of understanding them. Yet closed access is locking them out of better understanding their conditions and their choices.”

And…

“As a society, we need to recognize that our understanding of disease doesn’t belong to science. It belongs to the patients (who are also usually our funders, by the way), and we should exist only to serve them.”

4.  What do you see as being critical for the future of patient advocacy?

The Internet, Open Data and The Semantic Web. In terms of the sharing of data from patients, PatientsLikeMe was the first platform (that I am aware of) that made it easy for patients to share their data online with others. Whilst this data is “open,” it is open to the PatientsLikeMe community (and selected others) but not open at large. As stated in June this year by Sir Paul Nurse, “the President of the Royal Society said there was a need to put safeguards in place to protect confidentiality.” Sir Paul said that in reality no data was “totally secure” and that doctors already relied on personal information for treatment. “If you want a complete guarantee of privacy you would have to diagnose and treat yourself,” he said. (Also, see the recent “Science as an open enterprise” report by The Royal Society).

In terms of the semantic web and link data, entities such as http://linkeddata.org/ and http://www.linkeddatatools.com/ have a lot of potential in terms of what we can do in a linked up world. Also in June, in his talk at TED Global entitled “Unreasonable People Unite,” John Wilbanks made a number of interesting points. From the TED Blog:

“Wilbanks’ proposal is a medical commons, a way for people to gather this medical data and share it freely. People are neurotic about privacy and keeping control of their data. ‘Some of us like to share as control.’ And, he believes we live in an age where people agree with him. He mentions a study run at Vanderbilt University in Tennessee. ‘It’s not the most science-positive state in America,’ he says. ‘Only 5% wanted out. People like to share if given the opportunity and choice.’ And not using this data to understand health issues through mathematical analysis ‘is like having a giant set of power tools but leaving them not plugged in while using hand saws.’”

How do we know we’re truly living in a Health 2.0 age?  Recently, we’ve discovered that a number of PatientsLikeMe members have fascinating blogs chronicling what it’s like to live with their respective health conditions.  For example, we told you in August about the acclaimed gastroparesis blog “My Broken Stomach,” written by one of our members, Mollee Sullivan, and last month, we spotlighted diabetes patient Michael Burke’s blog “Life on the T List,” which shares his experiences before and after a kidney transplant.

As a result of this growing trend, we’ve decided to begin a blog series featuring some of the other amazing bloggers that are part of the PatientsLikeMe community.  To start things off, we’d like to share our interview with Andrea, a three-star member who started a candid blog about life with bipolar I disorder earlier this year called “Lithium and Lamictal.”  (The title refers to the two treatments she’s found that work best for her.)  Tune in below to find out why she began blogging and what she hopes to achieve.

1.  Why did you decide to start blogging about bipolar disorder?

I decided to start blogging about bipolar disorder after 21 years of living with this health condition. I was diagnosed with manic depression (now referred to as bipolar disorder) in 1989, and the main reason I bought my first computer in 1997 was so that I could try to connect with other patients and research bipolar disorder using the World Wide Web. I just knew there had to be more information out there than what I had gotten from my psychiatrists and the few pamphlets and books I had read before everyday people began using the Internet for research.

I’m still trying to learn as much as I can about bipolar disorder and health and wellness. I have always been interested in finding information about how people are living day-to-day with the condition. When I decided to start my blog, I wanted to give readers a view into my life so that I could provide an example of someone who is trying to do her best to manage the condition. I hope that my blog will inspire others to take charge of their physical and mental health, and also to remain hopeful and positive.

2.  Your blog is called “Lithium and Lamictal.”  How long did it take to find this treatment combination, and what difference did that make in your life?

When I was first diagnosed with manic depression in 1989, I was given lithium as a monotherapy. It prevented mania, but I still got depressed and I just had to deal with it because psychiatrists wouldn’t prescribe antidepressants since I had a history of severe manias and psychotic breaks. I think it was 2001 when my then-psychiatrist recommended that I try Lamictal at a time when I had been stable for a while. I took it and I didn’t get depressed for a few years, but I did have some unpleasant side effects, so I discontinued it and eventually experienced a serious depression.

Last year, when I was going through another serious depression, my new psychiatrist suggested that I try Lamictal again. After several months, my depression lifted, and after reflecting on my experiences with the medication, I realized that while Lamictal wasn’t great at relieving my depression, it definitely seemed to prevent my depression. At this point, I plan to take it indefinitely. I am taking a lower dose than with my old psychiatrist, and I also take medication and supplements to counteract the side effects. So now I take lithium and Lamictal and feel healthier than ever. All things considered, they are the best medications I have tried with the fewest side effects. Together they prevent mania and depression, and I hope I’ve found a combination of medications that will work for me for years to come.

3.  What have you gotten out of being a member of PatientsLikeMe?

I really like tracking all of my health conditions and medications as well as exercise and sleep. It’s a good way of figuring out what is working and what isn’t. It’s also a reminder that I need to continue to take good care of myself, and it lets me know when I am slipping and need to get back on track. My psychiatrist likes it when I bring the charts to my appointments. She has also started asking me to bring my blog posts.  The [PatientLikeMe] forums are a good way to learn from other patients about what is working for them. I post my new blog posts in the forum in the hope that they might help or inspire people.

4.  Your username at PatientsLikeMe is Yoga Lover.  What role does yoga play in your self care?

I was taking yoga from a great yoga instructor when I chose my username. Yoga is excellent for increasing strength, flexibility, relaxation, learning about mindfulness, and more. Not every yoga instructor focuses on spirituality, but mine did. We had candles burning, dim lighting, a picture of B.K.S. Iyengar and houseplants in the studio. We also had short discussions before class that everyone was encouraged to participate in.

Later in the class, as we went through the poses, he would talk to us about things we should be focusing on. Something that helped me the most was when he explained that just as a stomach digests, a mind thinks. The thoughts aren’t that important. We can decide who we are and what we want to do regardless of our thoughts. We don’t need to be embarrassed about our thoughts or judgmental of them, we just need to observe them.  He recommended reading the book Light on Yoga Sutras of Patanjali, by B.K.S Iyengar, which I did. If you are interested in yoga, I would recommend it highly.

Because of financial considerations, I stopped attending that yoga class and joined my local YMCA. I take a spinning class three times a week and walk on the off days, as well as doing some swimming and strength training. I’m not going to a yoga class currently, but I still focus on things I learned in yoga about breathing, meditation, relaxation and mindfulness.

Last week, in Part I of this interview, PatientsLikeMe member and blogger Michael Burke shared his sister Linda’s struggle with type 1 diabetes.  Today, we learn about his own type 1 diabetes journey, including his June 2011 kidney transplant as a result of diabetes-induced kidney failure.

1.  What diabetes complications have you faced?

Diabetes is a disease that appears to be misunderstood by most people, in that the consequences of the disease can lead to many different complications.  As I mentioned earlier, both Linda and I suffered from diabetic retinopathy…essentially, you can go blind from diabetes.  Another complication is nephropathy, or kidney disease.  For me, this led to kidney failure and the eventual need for a kidney transplant this past June.

Heart disease is another major complication.  Personally, I never knew that I had any heart disease until one day my primary care physician sent me for a routine stress test.  During the stress test, the cardiologist felt it necessary to immediately admit me to the hospital and do a cardiac catheterization the next morning.  When he did, he found two blockages in my right coronary artery – one was a 90% blockage and the other was an 85% blockage.  I then had several stents placed.  After two years, those stents were becoming ineffective, and I required heart bypass surgery.  Lucky for me, there was a heart surgeon in Boston who was doing bypass surgery robotically.  What this meant for me was a much smaller incision (about an inch and a half compared to the whole chest being opened up), and being a diabetic, less risk of infection and a shorter recovery time.

Another complication is [diabetic] neuropathy, or nerve damage.  Typically, this usually affects the feet, but other parts of the body can be affected as well.  As for Linda and I, the neuropathy is/was primarily in our feet.  For Linda, it was extremely painful, with the feeling that you are constantly being poked in your feet with something very sharp.  For me, the feeling has been quite different, in that there is no feeling, at least around my big toes, which in turn has caused some balance issues for me.  Neuropathy is serious, it’s not just that it is painful for some and a loss of feeling for others.  It can also lead to amputation of your toes, your foot, or in drastic circumstances, part of or all of your leg.

2.  What was your kidney transplant experience like, and how are you doing now?

I went through a whole lot of emotions over the course of getting this new lease on life.  Although I had been prepared by my kidney doctor over the last several years that I was most likely going to need a kidney transplant, the day I sat with the transplant team for the first time was absolutely frightening and surreal at the same time.  It’s hard to explain.

I just remember sitting with the transplant team and when the transplant doctor said, “Ok, we will put you on the transplant list within the next few days, and we will move forward,” my heart was pounding so hard I thought it was going pop out of my chest.  There is also a lot of anxiety that goes along with the whole transplant process.  At first, I didn’t know where the kidney would come from.  I knew there were family members who said that they wanted to be tested and now I was also on the national transplant list.

When my brother Tommy was starting the testing process, I kept going back and forth in my head.  It would be great to have someone close to me donate, but then there was the guilt.  If I ever rejected their kidney now they are left with just one.  As it turned out, Tommy was a 5 out of 6 antigen match, and he donated his kidney to me in June.

I had often heard before the transplant that you won’t understand how badly you felt or how sick you were before the surgery until after the surgery.  That could not be a truer statement.  I never really felt sick before, and I have been told that is because kidney disease can be very slow and progressive.  However, looking back today, I can honestly say that there has been a 180 degree turnaround.  I have much more energy and I just generally feel well – it has been a huge difference, and I have Tommy to thank for that.

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Are you a diabetes patient as well?  In honor of American Diabetes Month, share your thoughts and stories at CallingAllTypes.com.

Recently, it came to our attention that one of our members has an outstanding blog called My Broken Stomach, in which she chronicles her experiences with gastroparesis.

We reached out to hear to learn a little more about her as well as how she’s managing her condition, which causes partial paralysis of the stomach. (As a result, food stays in the stomach longer than normal, and patients may experience symptoms ranging from premature fullness to nausea to unplanned weight loss.)

What advice does this popular blogger have for digital age patients? And how has PatientsLikeMe and the experiences of other patients helped her? Check out our interview with Mollee Sullivan below.

1. Where are you in your gastroparesis journey? What’s gotten you there?

It’s been just over a year since my diagnosis, and I feel like I’ve finally reached the point where I can say I’m managing my gastroparesis well. I know I still have a lot to learn, and I still have bad days, but I have many more good ones. There have been a lot of factors involved in getting me here: sticking to my low-fat, low-fiber diet; taking probiotics daily; exercising regularly; reducing stress; getting enough sleep; building a strong support system; and maintaining a positive attitude.

2. What have you gained from being a member of PatientsLikeMe?

I’ve gained access to a community of other individuals who have gastroparesis, and I have another tool for logging my symptoms, weight and treatments. It’s also interesting to see what clinical trials are going on for gastroparesis. I think PatientsLikeMe will become even more beneficial over time as more and more people join.

3. What’s the most important thing you learned from another patient with gastroparesis?

That it’s possible — and actually beneficial — to exercise when you have gastroparesis. At first, I was afraid I’d lose more weight or push my body too hard if I went running, but after talking with a woman who has gastroparesis and finished a marathon, I was inspired to get my running shoes back on. I completed a 10K this past spring and was able to maintain my weight; plus, I felt a lot better on the days when I went running. I’ve kept up a regular exercise program since then, and I plan to participate in the 10K every year.

4. What are your tips for living in the age of Health 2.0?

Get involved! There’s no reason to feel alone with gastroparesis or any other health problem these days with all the blogs and online support groups where patients can connect. Unfortunately though, some forums seem to be overrun with whiners, so use positive, reliable sites (like PatientsLikeMe) and find people on them who are encouraging. And while it can be helpful to read about what others are doing to manage their illnesses, ultimately you have to do what’s best for you.

Finally, don’t try to diagnose yourself on the Internet — every time I did that, it told me I was either pregnant or dying. (I’m neither.)