Rare disease

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Summer Reading: “Get Well Soon: History’s Worst Plagues and the Heroes Who Fought Them”

Summer Reading: Get Well Soon: History’s Worst Plagues and the Heroes Who Fought Them, by Jennifer Wright

At Wellpepper, we’re huge proponents of evidence, and have worked for years with researchers from Boston University and Harvard University to prove that the things that seem like common sense, like providing help outside the clinic in a digital format, will truly improve patient outcomes. Given today’s focus on evidence-based medicine, and even the sometimes dismissal of common sense if there’s no randomized control trial (even chicken soup is subject to peer review), it’s amazing to remember that we once knew so little about what makes us sick, or the difference between correlation and causation.

If you don’t think you’re interested in plagues, think again. This book is a rollicking journey through a history of plagues that is both funny, sarcastic, and tragic. It reminds us that things that seem obvious today might not have been in the past, and that we’re never that far from mass hysteria when we don’t understand the root cause of a new healthcare epidemic.

While there is a chapter dedicated to each historical epidemic, Wright does not talk about the AIDs epidemic of the 1980s. She believes that history needs to be shared by the ones who were there, while her job is to amplify the voices of history so that we stop making the same mistakes. By uncovering how society, medical professionals, or government either did or didn’t cope with a particular epidemic, Wright offers valuable lessons for today.

For example, when exploring leprosy (which by the way, was a required medical test to get a Russian visa when I moved there in 2008 with Microsoft: spoiler alert, I don’t have it), Wright says:

“Diseases don’t ruin lives just because they rot off noses. They destroy people if the rest of society isolates them and treats them as undeserving of help and respect.”

When people blame others for their diseases, or treat them differently, we are not acting better than our ancestors.

Wright also puts into perspective why all types of people fall for information that now may seem ridiculous, with this analogy:

“If you were a peasant and someone said, “If you live in a sewer, the bubonic plague won’t kill you,” your reaction likely wouldn’t be, “I am curious to hear the science behind that.” Your response would be, “Point me to the nearest sewer.”

It’s up to medical professionals to understand why someone believes what they believe, and then try to provide alternate evidence, rather than dismiss it out of hand. It doesn’t mean that you can’t debunk the value of living in a sewer, but do it by understanding where the information came from in the first place. (And also don’t forget that the fake healthcare information is much easier to access than medical journals locked behind firewalls.

Stories of the Spanish flu, and government-sanctioned and media campaign to downplay (aka ignore or bury) the seriousness of the illness so as to not divert energy and enthusiasm for the war effort, versus the example of Marcus Aurelius during the Antonine Plague taking care of business by offering government burials and time off to go to funerals, which both kept bodies from piling up and acknowledged there was a serious problem.

Wright admonishes us to choose leaders well.

“When we are electing government officials, it is not stupid to ask yourself, “If a plague broke out, do I think this person could navigate the country through those times, on a spiritual level, but also on a pragmatic one? Would they be able to calmly solve one problem, and then another one, and then the next one? Or would bodies pile up in the streets?”

As we start to repeat the mistakes of the past (measles anyone?)Wright makes sure to remind us that with our natural human instinct to lean away from bad news, we often forget how bad things were. Measles, anyone?

“Polio was effectively eliminated throughout the world. And then people just … kind of forgot all about polio. This seems to be the human response to any disease. People forget diseases ever existed the minute they are no longer being affected by them. Maybe that’s understandable. Maybe if we all thought about all the potential diseases the world is teeming with, and the extent to which we are, every day, dancing on the edge of a volcano, the world would seem too terrifying to walk around in at all. Or we’d just vaccinate our kids.”

If you’re interested in medical history, policy, or historical epidemiology this makes a light summer read. I’m not kidding. Also, the chapter on Spanish flu should be made into a dystopian/future past film. It’s got everything: media and government cover up, bodies in the street, a mystery, and a hero fighting against the status quo.

Posted in: Behavior Change, Clinical Research, Healthcare motivation, Healthcare transformation, population health, Rare disease

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LAM Conference – A patient’s perspective

Dr. George Pappas, LAM Regional Clinic Director

Last weekend, my husband and I attended the Regional TSC and LAM Conference at Swedish Medical Center in Seattle, WA. This conference covered current research developments, treatment options, and patient education. I attended because I wanted my husband to learn more about Lymphangioleiomyomatosis (LAM), because I am a patient. The LAM Foundation defines LAM as “a rare lung disease that usually strikes women during the prime of their lives… this disease is characterized by an abnormal growth of smooth muscle cells, especially in the lungs, lymphatic system, and kidneys.” LAM occurs almost exclusively in women, and it is usually misdiagnosed for years, often as asthma, emphysema, and/or bronchitis. LAM is considered a progressive disease, which can lead to lung transplantation 10 years post diagnosis or for some, like me, it progresses slower. Treatment with a mTOR inhibitor, Rapamune, may improve lung function, which was all the buzz at this conference, but unfortunately there is no cure.

This conference was coordinated by the patient advocacy networks, The LAM Foundation and TS Alliance, and was designed to provide patients with the opportunity to interact with the LAM scientific community, physicians, and patients. I have to be honest, I was surprised to see a packed room because there are only 3-5 LAM patients per million women in the world. I later learned that newly diagnosed patients traveled from as far as Alaska with their loved ones for the same reasons as I: to learn more about clinical drug trials, to ask questions, and meet other ‘Lammies’. This mutual interest was palpable during the presentation by Dr. Ray Yeung, a surgeon and renowned LAM expert. Hands were flying up with questions. Dr. Yeung spoke about the pros and cons of clinical trials, and the pathogenesis of Angiomyolipomas (AML) and LAM. Dr. Yueng had a great amount of positive energy for what he has learned about LAM through his research and it was awesome to hear from a scientist about the importance of patients getting involved in clinical trials.

After the session with Dr. Yeung, we had lunch and I got to talk to a very lovely woman that worked as a Patient Relations Advocate for Lundbeck, a pharmaceutical company that sponsored the conference. Her role was to bring the face of the company to the patient advocacy foundations and their patients, and in return be the voice of patients in order to always keep us in the forefront of the company’s mission. I was particularly impressed with this, especially coming from the pharmaceutical industry, which tends to get a bad rap as being money centric. I continue to be awestruck with her grace, attitude, and lovely disposition, and how she didn’t once talk about her company, but wanted to know more about ME, not my disease. I really hope that our talk (and the fact that I thanked her repetitively) and the other conversations she had with patients that gathered around us, made her journey worth it.

On the drive home, she really got me thinking about how important her role is, and how the information she gathered will be priceless to both Lundbeck and to the LAM community; what she learned cannot be found in any search engine or book. I believe there is a huge disconnect between patients and some of the key players in making us… well, not patients anymore. The folks that advocate for us are so important because not only do they form an overarching understanding of disease, research treatments, help us keep symptoms under control, argue with the insurance companies, help us manage setbacks, etc., they also help us realize there is meaning to getting up in the morning and living life knowing we are not alone. It’s like having a big mama bear always looking out for you, so you can focus on you and not your disease.

Upcoming events…
The International Rare Diseases Research Conference & LAMposium, Cincinnati, OH, Sept 22-25, 2016
LAM Regional Conference, Cleveland Clinic, November 5, 2016.

Posted in: chronic disease, Clinical Research, Managing Chronic Disease, Patient Advocacy, patient engagement, Rare disease, Research, Seattle

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