Published by
Stanford Medicine

Author

Ask Stanford Med, Chronic Disease, Clinical Trials, Patient Care

Ask Stanford Med: A focus on scleroderma

Ask Stanford Med: A focus on scleroderma

Melissa Warde’s life was forever changed 21 years ago when, at the age of 15, she was diagnosed with scleroderma. At the time, little was known about the chronic connective tissue disease, which involves the hardening and tightening of the skin and fibers that provide the framework and support for the body. “I knew from that day forward, I could sit back and wait for the disease to progress or I could, to the best of my ability, work to control the disease within myself,” Warde said during an Ask Stanford Med Google+ Hangout last week. “I knew I had to have a cheerful disposition, despite the tragedy that I was dealt, and of course having a positive attitude really helped me to focus on the winnings of life.”

During the live conversation, Warde was joined by Lorinda Chung, MD, director of the Scleroderma Center and co-director of the Multidisciplinary Rheumatologic Dermatology Clinic at Stanford, and Karen Gottesman, patient services director for the Scleroderma Foundation of Southern California, for a panel on scleroderma research and progress being made to enhance patients’ quality of life.

Chung opened the discussion with an overview of recent modifications to the disease criteria used in diagnosing scleroderma. Since no two cases of scleroderma are alike, the disease can often be difficult to diagnosis. However, early detection (.pdf) is critical for improving patient outcomes. Under the new criteria, physicians are directed to look for symptoms such as puffy fingers, capillary changes in the nail folds or Raynaud’s disease, which is present in 90 percent of patients with systemic sclerosis. Chung said:

Previously, patients really had to have significant, pretty obvious, skin tightening in order to meet the classification criteria. Or have interstitial lung disease or pulmonary fibrosis, which is scarring in the basis of the lungs, in order to meet the criteria.

These new classification criteria will enable rheumatologists, who may be less experienced in scleroderma, to detect early signs and then refer [patients] appropriately for an accurate diagnosis.

Following Chung’s update on the modifications to the disease criteria, Gottesman spoke about how patients can mange stress related to learning they have a rare, incurable disease and continue living life to the fullest. She advised:

Really learn to be your own advocate. Part of that means educating yourself, not only on all the different aspects of the disease, but also on what type of scleroderma you have so you are aware of possible symptoms that come up.

I think what scares a lot of patients and is really stressful is when you hear of a disease that doesn’t have a cure. But you have to keep in mind that there are hundreds of diseases without cures and we have a lot of treatments in the toolbox to treat the symptoms. At the end of the day you have to learn to co-exist with the disease and that process is really different for every single patient.

Being a proactive patient, Gottesman said, also means being a compliant patient and following through on properly taking any prescribed medications, completing physician recommended tests and other instructions from health-care providers. She said, “If you have a different game plan in mind, then you really need to be upfront [with your doctor] about what it is you need and what you think you want to do, so that you can communicate. That will help you in the long run.”

Continue Reading »

Medical Education

Medical student to surgical patient: “You can learn a lot from watching. Thank you for letting me watch”

surgery_040714Over on the “This May Hurt a Bit” blog, Harvard Medical School student Shara Yurkiewicz shares her experience of witnessing a common surgical procedure turn fatal after the patient’s blood pressure suddenly dropped and failed to recover.

In the emotionally honest account, Yurkiewicz tells the patient:

[The surgery] was going so smoothly that we were humming along to “Who Says You Can’t Go Home?” It was during the bridge of the song that your blood pressure suddenly dropped. The anesthesiologist called it out. I looked at the monitor and saw numbers flashing in red.

There was a lot of red, actually. Blood in the wound, blood in the suction container, blood in transfusion bags, bloody footprints on the floor. No more than with any other patient. But I think somewhere along the way I learned to take the sight of liters of blood for granted.

I was scared. I stopped watching them stitch and stared at the monitor, which suddenly seemed like my closest connection to you. They called out the medications they were giving you to raise your blood pressure.

After a few minutes, it worked. Your blood pressure slowly climbed to green numbers. I was still shaking as I silently willed the numbers to stop bouncing around.

Unfortunately, Yurkiewicz was unable to will the patient’s blood pressure to remain stable, and the fast-working surgeons were unable to save him. As she says good-bye to the patient, she writes, “You can learn a lot from watching. Thank you for letting me watch.”

Previously: Reality Check: When it stopped feeling like just another day in medical school, Sleep on it: The quest for rest in the modern hospital, Introducing SMS Unplugged and Facing mortality
Photo by U.S. Navy

Events, Stanford News

Tickets for TedxStanford 2014 go on sale Monday

Tickets for TedxStanford 2014 go on sale Monday

TedxStanford_040314On May 10, Stanford will host its third TEDxStanford event under the theme “Above and Beyond.” Tickets for the popular daylong conference will go on sale Monday and can be purchased online from the Stanford Ticket Office.

A recent Stanford News article highlighted some of the speakers for this year’s program, which includes a double-lung transplant recipient who plays the bagpipe, a Stanford student and championship-winning professional racecar driver and a pair of two-time U.S. amateur dance champions in American Rhythm. Melinda Saks, producer and organizer, described the event saying, “TEDxStanford is an intellectual variety show that reflects how humanities, technology, medicine and arts all intersect at Stanford University to create a remarkable day no one will want to miss.”

Among the speakers is Jill Helms, PhD, a professor in the Department of Surgery. Helms leads a team of researchers whose focus is activating a patient’s own stem cells at the site of an injury to speed up tissue healing. As explained on the TEDxStanford site, “The team’s strategy is to ‘commandeer’ the molecular machinery that regulates stem cell self-renewal and proliferation, and in doing so, stimulate tissue regeneration even in people whose own repair mechanisms aren’t working well.”

Previously: Krishna Shenoy discusses the future of neural prosthetics at TEDxStanford and Russ Altman discusses how genetics can impact your response to prescription drugs
Photo by Tamer Shabani

Nutrition, Stanford News, Videos

Improving your health using herbs and spices

Can certain herbs and spices really boost immunity, control blood sugar, lower blood pressure and ease joint pain? As registered dietician Alison Ryan discusses in this Stanford Hospital & Clinics video, a growing body of scientific evidence suggests the answer is yes. During the 90-minute presentation, she explains in detail how ginger, turmeric, cinnamon and other ingredients can add a healthful punch to any meal, snack, or beverage by working to curb inflammation and prevent or delay certain types of cell damage. The talk is part of the Healthy Strides Ernest Rosenbaum Cancer Survivorship Lecture Series presented by the Cancer Supportive Care Program at Stanford.

Previously: How food may influence our cells and overall health and Nature/nurture study of type 2 diabetes risk unearths carrots as potential risk reducers

Aging, Genetics, Stanford News, Videos

Unlocking the secrets to human longevity

Unlocking the secrets to human longevity

Does the key to extending life lie within our genetic code? In this Stanford+Connects micro lecture, Stuart Kim, PhD, a professor of developmental biology and genetics, explains why he believes the answer is yes.

In his lab at Stanford, Kim and colleagues study functional genomics and aging and the search for genes that can either speed up or slow down aging, in particular with respect to the kidney. During this talk, he shares some of his lab’s advances in developmental biology in doubling the lifespan of a nematode, which is the world’s fastest-aging animal.

Previously: Male roundworms shorten females’ lifespan with soluble compounds, say Stanford researchers, Key to naked mole rat longevity may be related to their body’s ability to make proteins accurately, Longevity gene tied to nerve stem cell regeneration, say Stanford researchers and California’s oldest person helping geneticists uncover key to aging

Ask Stanford Med, Autoimmune Disease, Chronic Disease

Join Ask Stanford Med for a live discussion about scleroderma on Wednesday

Join Ask Stanford Med for a live discussion about scleroderma on Wednesday

hands_laptop_033114Although scleroderma is derived from the Greek words meaning “hardness” and “skin,” its symptoms affect far more than patients’ epidermis. The complex, rare disease can cause damage to the vascular system, lungs, kidneys and gastrointestinal tract with potentially life-threatening consequences.

On Wednesday at 4:30 PM Pacific time, we’ll be hosting an Ask Stanford Med Google+ Hangout about scleroderma research and progress being made to enhance patients’ quality of life. The live video discussion was organized in partnership with the Scleroderma Foundation and Inspire, a company that builds and manages online support communities for patients and caregivers.

Our panel of special guests includes Lorinda Chung, MD, director of the Scleroderma Center and co-director of the Multidisciplinary Rheumatologic Dermatology Clinic at Stanford; Karen Gottesman, patient services director for the Scleroderma Foundation of Southern California; and Melissa Warde, who was diagnosed with scleroderma at age 15 and has lived with the disease for more than two decades.

Panelist will address a range of topics, including:

  • Recent modifications to the disease criteria used in diagnosing scleroderma
  • The importance of patients being screened for pulmonary hypertension
  • The use of rating skin-thickness progression to help determine prognosis
  • A patient’s perspective on participating in a clinical trial
  • Efforts to develop online tools that enhance quality of life
  • Tips on how patients can live life to the fullest despite this debilitating disease

To participate in the discussion, watch the broadcast on the Stanford Medicine YouTube channel. A link to the hangout will also be tweeted on the @SUMedicine feed and posted on the School of Medicine’s Facebook page once the broadcast begins. Only panelists will be featured on screen, so audience members don’t need to be camera ready to join the conversation.

The public is welcome to submit questions for panelists in advance of the discussion by posting them in the comments section below before 3 PM Pacific time tomorrow (Tuesday). Questions can also be submitted during the live video discussion via Twitter using the hashtag #AskSUMed.

Previously: Save the date: Ask Stanford Med Google+ Hangout on Scleroderma April 2Another piece of the pulmonary-hypertension puzzle gets plugged into place, Patients with rare diseases share their extraordinary stories and Restoring hand function with surgery 
Photo by Judit Klein

Public Health, Videos

Exploring popular health myths and how they influence health-care decisions

Exploring popular health myths and how they influence health-care decisions

This week on the TEDMED Great Challenges series, guests discussed popular health myths, ways these myths spread. and how doctors and patients can better evaluate medical information. In the video above, Rusty Hoffman, MD, chief of interventional radiology at Stanford, addresses a variety of topics, including misconceptions related to heart disease and uncertainty around new mammogram guidelines, and discusses building trust between doctors and patients to dispel myths using evidence-based medicine.

Previously: European experts debunk six myths about flu shot, Four common myths about U.S. health care, Exploring popular sleep myths and MythBusters looks at pain myths with Stanford doctor on April 28

Health and Fitness, Health Disparities, Stanford News, Videos

AAMC’s Health Equity Research Snapshot features Stanford project on virtual health advisers

AAMC's Health Equity Research Snapshot features Stanford project on virtual health advisers

To improve public health, Stanford and academic medical centers around the country conduct research to identify solutions to systematic and preventable inequities in medicine and health care. A selection of these projects – including research led by Abby King, PhD, professor of health research and policy and of medicine – have been highlighted in the 2014 Health Equity Research Snapshot developed by the Association of American Medical Colleges (AAMC).

King and colleague Timothy Bickmore, PhD, with Northeastern University, are conducting ongoing research examining how virtual advisers can promote physical activity regardless of individuals’ level of education or language. Findings  published last August demonstrated how individuals who participated in an exercise program guided by the online coach had an eight-fold increase in walking compared with those who did not. In the above video, King explains how virtual advisers can be as effective as their human counter parts in promoting regular physical activity and can reach far larger groups of people in a more cost effective way.

In addition to King’s video, the snapshot features six others produced by health-equity researchers and their teams that represent work on a wide array of health outcomes and populations. The AAMC initiative is intended to demonstrate how research at every stage – from basic discovery to community-based participatory research – can contribute to closing or narrowing gaps in heath and health care.

Previously: Help from a virtual friend goes a long way in boosting older adults’ physical activity
Video still in featured-entry box by Relational Agents Group, Northeastern University

Ask Stanford Med, Autoimmune Disease, Chronic Disease

Save the date: Ask Stanford Med Google+ Hangout on Scleroderma April 2

Save the date: Ask Stanford Med Google+ Hangout on Scleroderma April 2

Updated 03-25-14: Readers are welcome to submit questions for our panelists in the comments section below. We’ll collect questions until 3 PM Pacific time on April 2. A selection of the questions will be answered during the live video conversation, which will be broadcast on the Stanford Medicine YouTube channel starting at 4:30 PM Pacific time. A future blog entry will provide details on how to watch the Google+ Hangout.

***

3-17-14: An estimated 300,000 Americans are living with scleroderma, a chronic connective tissue disease that is generally classified as one of the autoimmune rheumatic diseases. While hardening of the skin is the most visible manifestation of scleroderma, symptoms of the disease vary greatly among patients and the effects range from mild to life-threatening. Researchers are still working to determine the cause of scleroderma, and currently there is no cure for the disorder.

To foster conversation about this complex, rare disease, we’re partnering with the Scleroderma Foundation and Inspire, a company that builds and manages online support communities for patients and caregivers, for a Google+ Hangout about scleroderma research and progress being made to enhance patients’ quality of life. Among the panel of special guests are:

  • Lorinda Chung, MD, director of the Scleroderma Center and co-director of the Multidisciplinary Rheumatologic Dermatology Clinic at Stanford. Chung is actively involved in clinical, translational, and epidemiologic research on systemic sclerosis and related connective tissue disease, and she’s the principal investigator on a number of clinical trials of new potential therapies for scleroderma patients.
  • Karen Gottesman, patient services director for the Scleroderma Foundation of Southern California. Both a patient and a long-standing patient advocate, she is author of The First Year – Scleroderma, An Essential Guide for the Newly Diagnosed. Gottesman is also a member of the Scleroderma Patient-centred Intervention Network (SPIN), an international consortium of scientific researchers and clinicians organized to develop, test and disseminate psychosocial interventions to improve the quality of life for scleroderma patients worldwide.

Audience members are welcome to submit questions during the live video discussion via Twitter using the hashtag #AskSUMed. Please save the date and join us on April 2 at 4:30 PM Pacific Time.

Previously: Another piece of the pulmonary-hypertension puzzle gets plugged into place, Rules for living with a chronic illness, Patients with rare diseases share their extraordinary stories and Restoring hand function with surgery

Medical Education, Medical Schools

Using digital resources to redefine the medical education model

iPad_032514Today on MedCrunch, Stanford medical school alumna Stesha Doku, MD, examines how digital resources can enhance the traditional medical school curriculum to ” help health-care professionals succeed in their goals to deliver quality care.” Highlighting online learning sites such as PodMedics, which offers medical and surgical video tutorials, Doku writes:

What we gain from the growth of such applications and more general sites such as Khan Academy is that the physical classroom is becoming less relevant. It’s not so much a question of the classroom being not enough, but rather if the classroom is the correct place to deliver our learning materials in the first place. If so, are we delivering distilled and most importantly relevant information?

While we value those who are ‘smart’ in medicine, we must make more effort to value those who can translate their knowledge into improving outcomes and progressing our field. This may mean spending less time on acquiring knowledge that has no application. This may also require spending more time practicing application.

As reported previously on Scope, the School of Medicine is developing the Stanford Medicine Interactive Learning Initiatives, which utilizes the “flipped classroom” model to make better use of the fixed amount of educational time available to train doctors.

Previously: Social learning in a medical photo-sharing app for doctors, A closer look at using the “flipped classroom” model at the School of Medicine, Combining online learning and the Socratic method to reinvent medical school courses, Using the “flipped classroom” model to re-imagine medical education and Rethinking the “sage on stage” model in medical education
Photo by Stanford Ed Tech

Stanford Medicine Resources: