Posted: November 25th, 2013 | Author: kovlerdaily | Filed under: Events, Individual and Family Wellness Program, Research and Grants | Tags: adult stem cell project, beta cell encapsulation, clinical research in pump and sensor technology, friends for the cure, fundraising for research, genetics and diabetes, health and wellness program | No Comments »
Dr. Louis Philipson describes research projects to attendees.
Last Wednesday, friends gathered at the University of Chicago Kovler Diabetes Center to celebrate a bright future for cure-focused diabetes research. Attendees were members of the Friends for the Cure committee, assembled to discuss plans and progress for the Mardi For a Cure benefit gala to be held on March 1st 2014.
Friends for the Cure is a committee of friends and family united with the common goal of raising funds to find a cure for diabetes. Focused primarily on finding a cure for type 1, this dedicated crew of over 60 individuals throws unique, once-in-a-lifetime parties every year to raise money to support diabetes research. This year’s event, Mardi for a Cure, takes on the theme of a New Orleans Mardi Gras party to raise money for cure-focused diabetes research here at the Kovler Diabetes Center.
Fellow Kovler researcher gives insight into one of the diabetes research labs
At this special meeting at the University of Chicago, Friends for the Cure committee members discussed achievements in the planning process for the event. They also had the opportunity to tour the Kovler Diabetes Center labs and discuss with researchers how and when we can expect a cure for diabetes to emerge. After seeing research in action, the committee decided on five research projects to support with funds raised by the Mardi for a Cure:
- Beta Cell Encapsulation: Research into the idea of “shrink-wrapping” insulin-secreting beta cells during islet transplantation. A successful method would avoid rejection during the transplant and allow the individual to secrete insulin using the transplanted cells!
- Clinical Research in Pump and Sensor Technology: Testing the most advanced technologies in insulin pumps and glucose meters here in Chicago to discover the most precise methods of diabetes management.
- Adult Stem Cell Project: Investigating the use of adult stem cells to generate insulin-producing beta cells, which avoids the complications of a transplant.
- Genetics and Diabetes: Building on the original work of Dean Kenneth Polonsky and Dr. Graeme Bell, and now Dr. Philipson, Dr. Greeley, and Dr. Naylor to emphasize precision genetic medicine in diabetes diagnosis and treatment.
- Health and Wellness Program: Sustaining an innovative program exclusive to the Kovler Diabetes Center that focuses on the psychosocial impact of diabetes on ALL patients and families.
This is a diverse collection of projects that seek to not only find a cure in the near future, but also improve the lives of those living with diabetes right now. The Kovler Diabetes Center is incredibly honored to be the recipient of ALL the proceeds from Mardi for a Cure to continue this important research!
We hope you will come have a blast with us at this once-in-a-lifetime party! Save the dates have already been mailed. To get yours, email firstname.lastname@example.org. To learn about everything Friends for the Cure is doing to find a cure here in Chicago and to stay up-to-date about the event, like Friends for the Cure on Facebook.
Posted: August 21st, 2012 | Author: kovlerdaily | Filed under: Diabetes Programs, Kovler Team Members, Research and Grants | Tags: ASH Comprehensive Hypertension Center, Chicago, diabetes, diabetic nephropathy, dr. lou philipson, George Bakris, kidney disease, Knapp Center for Biomedical Research and Discovery, kovler diabetes center, Michael Eadon, The University of Chicago, university of chicago medicine | No Comments »
We are excited to announce that the Kovler Diabetes Center, in partnership with the ASH Comprehensive Hypertension Center, hosted an August 9th conference exploring the topic of diabetic nephropathy. This conference brought together some of the brightest scientific minds to discuss issues surrounding kidney function and diabetes. Topics of discussion included nephropathy progression, biomarkers, nomenclature and clinical trials.
The University of Chicago Medicine’s very own Louis Philipson, MD, PhD, FACP, George Bakris, MD, and Michael Eadon, MD presented their work, elucidating the importance of kidney care among populations living with diabetes.
Dr. Louis Philipson
Dr. Philipson, director of the Kovler Diabetes Center and Professor of Medicine and Pediatrics, centered his portion of the conference around the importance of glycemic control in relation to nephropathy progression. Dr. Eadon’s presentation focused on the assessment of kidney function, the comparison of old and new biomarkers and their abilities to predict nephropathy progression, and decisions regarding renal imaging. Dr. Eadon is a nephrology fellow at the University of Chicago. Finally, Dr. Bakris, director of the ASH Comprehensive Hypertension Center, presented fascinating information on topics including nomenclature of nephropathy staging, surrogate markers of nephropathy progression, and an interactive case presentation.
Team Members Carrie & Jasmine
Conference-goers spent the entire day with our University’s presenters, arriving at the Knapp Center for Biomedical Research and Discovery at 8:30 AM and departing from the Center at 4:00 PM.
Kovler feels privileged to have been able to play a part in furthering education on the relationship between diabetes and kidney disease.
Posted: July 16th, 2012 | Author: kovlerdaily | Filed under: Diabetes Programs, Guest Blog, Research and Grants | Tags: diabetes, Diabetes Prevention Program Outcomes Study, DPPOS, Margie Matulik, metformin, New England Journal of Medicine, Rina DeSandre | 2 Comments »
I am the Program Coordinator for the Diabetes Prevention Program Outcomes Study, a multi-center study which has been ongoing since February 1996. We ended recruitment in February, 1999. There are two staff members working on the DPPOS here – myself and Rina DeSandre. We have worked together since the study’s inception!
Our study is looking at how to prevent diabetes in people at high risk. It was a very stringent screening process, but finally after three years we finished recruitment and randomized 153 people. There are three treatment groups now. One is using the medication metformin, which is currently indicated for treatment of diabetes, one group is the placebo and the other group is intensive lifestyle. Those in the intensive lifestyle group have a goal to lose 7% of their weight and do at least 150 minutes of moderate exercise (like a brisk walk) each week.
Since our study has been going on so long, we actually have some results initially published in the New England Journal of Medicine in 2001. It was found that lifestyle was almost twice as effective (a 58% reduction in risk) at preventing diabetes as taking metformin for prevention. However, the metformin did have a 31% reduction in risk of getting diabetes.
Our participants are quite loyal – with a greater than 90% retention rate. They see us twice a year now. We also have classes on a quarterly basis and all are invited and can bring a guest as well. There are various topics ranging from stress reduction to resistance training to eating a Mediterranean based diet.
We are planning on continuing the study until 2014. However, we are also in the process of planning for another extension. We still have many questions to be answered and our participants are also eager to continue. (What a great job I have!)
Program Coordinator, DPPOS
Posted: June 20th, 2012 | Author: kovlerdaily | Filed under: Guest Blog, Research and Grants, Transplantation | Tags: insulin, Islet Cell Transplant, kovler diabetes center, Lindsay Schenck, The University of Chicago, Type 1, type 1 diabetes, university of chicago medicine | No Comments »
Welcome to the wonderfully exiting world of research!
As the new Islet Cell Transplant Coordinator, I am new to Islet Cell transplant research and thought we could learn about it together.
Over in the Transplant Center at The University of Chicago we are researching the transplantation of islet cells from a deceased donor’s pancreas into a liver of the patient. Islet cells are the cells from the pancreas that produce insulin. First the Islet cells are isolated in a special solution, and then inserted into a liver vein much like any other solution. This is a non-invasive procedure.
Research on islet transplantation could be helpful for those with Type I to have better control of blood sugars. This research is currently being conducted in those with Type I who have trouble with low blood sugars, where they are no longer able to tell their sugar is too low during those light headed, shaky, wonky (yes, I think I made that word up) moments.
This research is being done in the transplant center because the islet cells that are used come from donated organs, just like a whole pancreas transplant. This research is similar to other studies that have been completed around the country and the world but applies the newest technology for better results.
To find out more about the islet cell transplant research check out the following websites: www.uchospitals.edu/specialties/transplant/pancreas-islet.html
Lindsay Schenck, RN, BSN
Islet Cell Transplant Coordinator
Posted: May 15th, 2012 | Author: kovlerdaily | Filed under: Research and Grants, Uncategorized | Tags: diabetes, dr. sargis, EDCs, environmental endocrine disruptors, kovler diabetes center | No Comments »
The last several decades have witnessed a dramatic deterioration in our health with the burgeoning obesity and diabetes epidemic. While lifestyle factors such as a poor diet and physical inactivity certainly contribute, these factors fail to explain the magnitude and rapidity of the diabetes explosion. As such, the search is on for contributing factors, and my laboratory has focused on the potential contribution of environmental pollutants to the surge in metabolic diseases.
Building off of my life-long interest in the environment, our work focuses on how chemicals with the capacity to alter hormonal signaling, environmental endocrine disruptors or EDCs, alter energy balance. We have multiple ongoing projects looking at the effects of EDCs on fat cell development and function, EDC-mediated disruption of insulin signaling (a precursor to the development of diabetes), and the effects of EDCs on energy metabolism in mice exposed to these chemicals in their food, similar to the way humans are exposed.
It is my sincere hope that these efforts will not only help us better understand the factors that contribute to the development of diabetes, but that this work will also provide the foundation for better regulatory action to eliminate diabetes-promoting chemicals from our environment.In addition to this work, we are currently developing research projects to explore the potential impact of various EDCs on the development of obesity and diabetes in humans naturally exposed to these chemicals. In addition to examining the effects of environmental pollutants on the development of type 2 diabetes, our collaborative projects will specifically look at both type 1 diabetes and gestational diabetes, two areas currently understudied in the field of endocrine disruption.
Posted: February 2nd, 2012 | Author: kovlerdaily | Filed under: Diabetes Resources, Kovler Diabetes Center Staff, Research and Grants | Tags: adipose (fat) tissues, bariatric surgery, body fat, brady, ehrmann, insulin resistance, kovler diabetes center, sleep deprivation, van cauter | 1 Comment »
I am excited to be a part of an innovative study that’s giving my team at the University of Chicago a fascinating glimpse into the relationship between insulin, sleep and body fat. We’ve been studying small biopsies of abdominal fat from volunteers who have taken part in sleep deprivation studies and are finding that when you’re sleep-deprived, you’re more likely to experience insulin resistance. This means that after you eat a meal, your body has to produce higher-than normal levels of insulin to handle the blood glucose levels in your bloodstream.
Eve Van Cauter, PhD
I’m collaborating on the study with Eve Van Cauter, PhD, and David Ehrmann, MD, internationally recognized researchers from the University of Chicago. Ehrmann is known for his studies on polycystic ovary syndrome, while Van Cauter conducted a range of widely published research that revealed an association between sleep deprivation and higher levels of body fat.
Normally, when insulin is released into the body, it releases a chemical that signals body cells – primarily in muscle, liver and fat tissue – to absorb glucose from the bloodstream. This process is known as insulin signaling. We’ve found that in sleep-deprived individuals, the insulin signaling process somehow goes awry, specifically at the site of fat cells.
Fat is actually your friend, but this fact gets lost sometimes in the literature. The adipose (fat) tissues are here to help you out. They’re a repository for long-term energy storage in the body. When adipose tissues can’t “do their job” and absorb blood glucose, the body senses that its own fat cells are starved for energy. It begins to resist weight loss, slowing its metabolism to conserve energy. The brain then produces chemicals leading to cravings for high-calorie foods.
David A. Ehrmann, MD
Over time, insulin resistance also progresses into diabetes and heart disease, and it’s a known risk factor for breast cancer, pancreatic cancer, lymphoma, dementia, kidney disease, nerve damage and heart attack. Why sleep deprivation causes a “short” in insulin signaling remains a mystery. While the immediate solution may be obvious – get more sleep – some individuals struggle with chronic sleep disturbances, such as periodic limb movement disorder, which leads to wakefulness throughout the night. The problems can last for years despite attempts at treatment.
I’m studying the effects of various medications on insulin-resistant individuals, in hopes of finding a drug that restores the normal insulin signaling process. We’re also looking at the effects of bariatric surgery on insulin signaling. The procedure is a drastic intervention, and somewhat of a ‘last resort’ in morbidly obese people. But we know that one to two weeks after the surgery, there’s a marked improvement in the patient’s metabolic health. A lot of patients will go off their diabetes medications, including insulin, because their own insulin levels have returned to normal. The question is, how does insulin signaling change after the surgery? At this time, that’s completely unknown.
But the studies promise to shed new light on insulin signaling at the molecular level. The insulin signaling study crosses traditional boundaries of what we think of as sleep science or clinical science. It’s an exciting new frontier, and it’s been a privilege to collaborate with Dr. Van Cauter and Dr. Ehrmann.
Matthew Brady, PhD
Matthew Brady, PhD
Associate Professor of Medicine in the Section of Adult and Pediatric Endocrinology, Diabetes and Metabolism
The University of Chicago Medicine
Dr. Brady is a published researcher widely known for his studies on metabolism, insulin and obesity. If you’re interested in being involved in a sleep study, have type 2 diabetes and are 18 years of age or older, please call the University of Chicago at 773-795-0141 for more information. This article originally appeared in the fall issue of Kovler Connection. Click here to read the newsletter in its entirity.
Posted: November 21st, 2011 | Author: kovlerdaily | Filed under: Diabetes Programs, Diabetes Resources, Kovler Diabetes Center Staff, Research and Grants | No Comments »
The University of Chicago Medical Center and the Kovler Diabetes Center are proud to support the South Side Health and Vitality Studies (SSHVS). We spoke with the Director and Principal Investigator , Stacy Tessler Lindau, MD, MAPP, to learn more about this incredible program.
What are the South Side Health and Vitality Studies?
The SSHVS are a family of inter-related studies designed by university researchers working with community leaders to produce knowledge that people can use to improve our lives, our health, and the vitality of our communities. We are focusing on generating knowledge that leverages the places that provide goods, services and jobs for the South Side and that leverages communication technology access and use.
What is the Center for Community Health and Vitality?
The Center for Community Health and Vitality (CCHV), led by Dr. Doriane Miller, works to provide community members with evidence-based knowledge about health and vitality issues prioritized by the community. The SSHVS is generating important, useful knowledge for the Center’s activities in the community.
Why are these initiatives important for the South Side of Chicago?
Chicago is one of the greatest cities in the world, with tremendous potential and will for growth. But poverty and health inequities are very real issues here that limit the ability of individuals to reach their full human potential. These initiatives complement those in other parts of our city, such as the work of west side communities with the Sinai Urban Health Institute, or the investments by the MacArthur Foundation in the Local Initiatives Support Corporation/New Communities Program. In these examples, health and community development organizations are working with other sectors, including the City leadership, to solve previously intractable problems with innovation based on evidence.
How will the CCHV and SSHVS achieve these goals?
We are part of a larger effort, the Urban Health Initiative (UHI), led by Eric Whitaker, MD, MPHExecutive Vice President, Strategic Affiliations and Associate Dean, Community-based Research. Our vision is that the South Side of Chicago will be a model of excellent urban health by 2025. We have created a working model, a playbook so to speak, for our work, called an Asset-Based Community-Engaged approach. First, before we build more or invest more, we figure out what we have. The asset census project, led by Daniel Johnson, MD and myself, takes an electron microscope approach to community assets. This project, which creates jobs for high school students and other community members, generates the most comprehensive data available about community assets. Anyone with an internet connection can use this information – and it’s already been used by more than 10,000 people for practical and research purposes. Early next year, we will launch a population health study to begin to understand what kinds and distributions of built assets appear to promote or be protective for health. In addition to research, the UHI focuses in two other areas that align with the core mission of our medical center: patient care and education. Through the SSHVS Collaborative, UHI is linking South Siders to primary care providers working together in a newly formed healthcare system. The South Side has never had a coordinated system of health care. There are also many educational initiatives, including training our medical students to work with our surrounding communities and providing incentives for promising residents from our training programs to stay and practice on the South Side.
Who is involved in these initiatives?
It’s fair to say that hundreds of people are involved in these initiatives, including university faculty, staff and students working alongside community leaders and residents. We even have faculty from other universities and leaders in the public sector working with us.
Where will these initiatives take place?
These initiatives are taking place on Chicago’s South Side, a 34 community-area region that comprises the primary service area of the medical center.
What is your role with SSHVS and its initiatives?
I am Director and Principal Investigator of the SSHVS. I lead a major component of the research and discovery for the UHI. I am also a practicing gynecologist with experience working at one of the South Side Healthcare Collaborative federally qualified health centers, university student care, and now providing care for women in our community with cancer and sexuality concerns.
How prevalent is diabetes in the South Side community?
Unfortunately, we know of no current data to answer this question. First of all, many people (perhaps as many as half) who have diabetes do not know they have it. They are undiagnosed. The best available data on diabetes prevalence come from the National Health and Nutrition Examination Survey (NHANES), but these only generalize to the level of Cook County and we have reason to believe diabetes rates may be higher here than in wealthier parts of the county. Estimates of diabetes prevalence from clinical data only tell us about the proportion of people in the health care system who have diabetes, not about those who don’t have health insurance, don’t use health care, or who have undiagnosed disease. If the South Side looks like the rest of the county or nation, rates are going up. Among older adults, rates of diabetes may be higher than 30% if we include those with undiagnosed disease.
What is SSHVS doing specifically for the diabetes community on the South Side?
Our approach has not been disease-specific. It is holistic. We are interested in knowing globally what we can do to create an environment where people are healthier and have fewer opportunities to develop disease. That being said, much of the data and work we are doing is of direct relevance to diabetes; it is a good example of a highly preventable, costly, environment-sensitive disease that could be impacted should the UHI work prove effective. We are working with diabetes experts at the Kovler Center, including Graeme Bell, PhD, Monica Peek, MD, MPH, Marshall Chin, MD, Doriane Miller, MD and others to ensure that the knowledge we generate is relevant for stemming the tide of diabetes and diabetes risk in our community.
We are providing data to the CCHV for its evidence-based programming and to other researchers and policy makers who are using the data in ways that should buffer against forces that are promoting diabetes in our community. Looking at our asset census data, we find that there are more than 8 times as many fast food restaurants as there are weight loss facilities per 10,000 population in our communities. And there are as many dialysis centers as there are weight loss facilities. How many pounds could be lost or gym memberships could be supported for the cost of just one patient per year on dialysis? This is the kind of question we have to be asking. Dialysis centers are big business and they go where the disease is. Studying the asset environment gives us empirical data about the distribution of disease in our communities.
What’s been the most interesting or challenging aspect of this initiative, for you personally?
I was at a meeting of the Robert Wood Johnson Clinical Scholars Program this week. I, along with Eric Whitaker and others working on similar efforts around the country, was a Clinical Scholar at the University of Chicago in 2000-02. The Clinical Scholars program has remained an important intellectual home and inspiration for me throughout my career. It has given me the skills and affirmed the values that make it possible to think big and to overcome institutional and societal barriers to solving big problems. At this meeting and other venues where smart people are working hard to solve health inequities and improve community health, I have realized that our biggest challenge is translation. How do we take the kind of research that gets people promoted in academe and make it align with the kind of knowledge and discovery that can transform a whole community?
There was a panel discussion at the RWJ meeting about workforce reform and what should be done to ensure that we have the right mix of people providing health care for the future. I asked the panel to imagine that a large urban community, say the South Side of Chicago, was working together toward the vision that we would become a model of excellent urban health by 2025. I asked them, based on all their work and expertise, to advise me on how we can ensure we have the right work force to provide basic health care for our 800,000 person population. The responses illustrate the challenge before us: a physician on the panel said I should look around the world (nowhere in particular), because we don’t have an answer to this question in the U.S. A medical school dean said “I applaud your megalomania.” A nurse dean emeritus on the panel pointed me toward restrictive regulation in Illinois that prevents nurses from practicing at the top of their skill set and suggested we work on changing that policy. So we have a very long way to go, not enough time, and we have to really think way outside box. I was looking for something much more concrete.
I’m a gynecologist, so I’m working beyond my formal training in asking these questions. If I don’t know something, I assume someone else does. How can we not have an answer to a community that simply wants to know how many doctors, nurses, dentists, social workers, and health outreach workers it needs to provide the basic services for its citizenship? One person commented that workforce planning is anti-American. Can we realize the vision of excellent urban health in a high poverty community without violating the basic principles of our democracy? Do we have the knowledge to do this? Are the research questions being asked at the right level with the population or the profession at the center of inquiry? These are the challenges.
Stacy Tessler Lindau, MD, MAPP, Director and Principal Investigator of the SSHVS
We are working on launching a new cohort study in two epicenters on the South Side – one a predominantly African-American region, the other a region with a large Hispanic population. This study will provide us with the deep dive into understanding how the built assets in the community are being used to stay healthy, get healthy and manage disease and how people are using communication technology to access assets in the community or beyond. We are also hoping to collect biological information that will give us much-needed insight into the prevalence of undiagnosed disease and disease risk.
We thank Ms. Lindau for taking the time to answer our questions. To learn more about the SSHVS, please visit their website.
Posted: November 10th, 2011 | Author: kovlerdaily | Filed under: Diabetes Programs, Events, Kovler Diabetes Center Staff, Research and Grants | No Comments »
Dr. Lou Philipson, Director of the Kovler Diabetes Center
On behalf of the Kovler Diabetes Center, I want to congratulate Dr. Lou Philipson on a recent award he received for his contributions in diabetes research and care. Dr. Philipson, our director, was honored with the prestigious Samuel Eichold II Memorial Award last weekend during the American College of Physicians (ACP) 2011 Laureate Awards Governor’s Dinner. The award ceremony took place at Osteria Via Stato in downtown Chicago and was hosted by Dr. Jim Foody, Governor of the ACP Illinois Northern Region Chapter.
Established in 2008 in honor of the late Dr. Samuel Eichold II, the award is given to a member of the ACP or to an organization that has made important health care delivery innovations for diabetic patients resulting in improved clinical or economic outcomes; and/or a member of the ACP who has conducted research that significantly improves quality care or clinical management in diabetes.
I’m so proud to work with Dr. Philipson…an active endocrinologist, scientist and Professor of Medicine & Pediatrics. He’s also a national and international leader in diabetes care and research, specifically in supporting individuals with genetic forms of diabetes. Dr. Philipson has tirelessly explored beta-cell function for more than 25 years and is dedicated to finding new treatments for diabetes that may someday lead to a cure.
It’s a proud day for all of us at the Kovler Diabetes Center, and we applaud Dr. Philipson for this prestigious achievement.
The University of Chicago Kovler Diabetes Center
Please visit our website to learn more about our incredible team of specialists, make an appointment or find out about our clinical trials.
Posted: October 28th, 2011 | Author: kovlerdaily | Filed under: Diabetes Programs, Diabetes Resources, Kovler Diabetes Center Staff, Patient Stories, Research and Grants | 1 Comment »
This article originally appeared on the University of Chicago Comer Children’s Hospital website in April 2011 and features specialists from the Kovler Diabetes Center, including Lou Philipson, MD, PhD, Siri Atma Greeley, MD, PhD and Graeme Bell, PhD.
Cameron Lundfelt with his parents Alissa and Geoff Lundfelt
It was a shot in the dark. But the Lundfelts typed out the e-mail anyway.
Life had become a series of measurements for the Lundfelts: Alissa, 31, and Geoff, 30. Their 2-year-old son, Cameron, had type 1 diabetes. Cameron needed an average of 180 shots of insulin a month and 15 blood sugar tests a day, which meant that every 2 to 4 hours, it was time for another test, another shot. The young couple, based in Anchorage, could recite their child’s 14- and 30-day blood sugar averages and how many carbohydrates Cameron had eaten the previous day. They had more difficulty remembering the first time he rolled over, or his first smile.
When Cameron turned 2, he was falling behind developmentally, which prompted concerns that he had autism. A geneticist confirmed that Cameron had a mutation in the KCNJ11 gene, and because of this mutation, his pancreas had the ability to produce insulin, but was unable to release it. This explained why Cameron had diabetes at such a young age.
At that time, the beginning of 2007, there were no pediatric endocrinologists in Anchorage or even in Alaska. But the Lundfelts had come across an article about Lilly Jaffe, a 6-year-old Illinois girl diagnosed with neonatal monogenic diabetes, a rare type of diabetes caused by the very same gene mutation Cameron had.
Alissa Lundfelt began to cry when she read that Lilly had undergone a treatment at the University of Chicago Medical Center that had made her insulin-free. The article featured Louis Philipson, MD, PhD, professor of medicine and director of the Kovler Diabetes Center, and Graeme Bell, Louis Block Distinguished Service Professor of the Department of Biochemistry and Molecular Biology and the Department of Medicine. Alissa Lundfelt decided to reach out to Philipson on a whim: She wrote an e-mail and sent it across four time zones.
Lou Philipson, MD, PhD
Thirty minutes later, the phone rang. It was Philipson.
“I was basically stunned,” Lundfelt said. “He asked me to send him the results of the genetic test. Should Cameron have the right form of the genetic mutation, it might be possible to wean Cameron off the insulin shots entirely.”
Philipson consulted with his colleagues, including Bell. The news that Cameron did indeed have the type of genetic mutation that responded to oral medicine, and not a life of insulin shots, was thrilling for the Lundfelts. “We felt like we were living a miracle,” Alissa Lundfelt said.
The Lundfelts arrived at the Medical Center a month later. In the course of five days, Philipson and his team planned to wean Cameron off of insulin and treat the mutation with an oral medication called glyburide. For the first time in his life, Cameron’s pancreas began to produce insulin. Instead of multiple shots a day, Cameron only needed three pills. He was among the first children transitioned from insulin to glyburide in the United States by the Chicago group, after Lilly Jaffe.
“This changed everything,” Alissa Lundfelt said. “Now Cameron could eat snacks, and he didn’t need constant injections and monitoring. He could be a kid.”
Lilly Jaffe with her mom Laurie
Since Cameron’s treatment, the monogenic diabetes story has continued to spread. It inspired the Illinois government to establish Lilly’s Law, named after Lilly Jaffe, which requires Illinois healthcare professionals to report cases of neonatal diabetes to a statewide database. The law was the first of its kind in the United States. Patients with her form of monogenic diabetes, and other mutations causing neonatal diabetes, now are followed in the database, which is directed by Siri Atma Greeley, MD, PhD, instructor of pediatrics and medicine in the Section of Endocrinology, Diabetes and Metabolism.
While such reporting in Illinois is mandatory, the database is open to monogenic diabetes patients nationwide. It has become the largest registry of its kind in the United States. The registry currently includes more than 200 patients who were diagnosed with diabetes before a year of age, although Greeley estimates there may be as many as 1,000 cases in the United States. He said the registry aims to help more children receive the oral treatment and to help researchers better understand the disease.
Researchers are investigating the particular types of mutation commonly associated with developmental delays, as in Cameron’s case. “A significant number of patients we see have the same sort of neurodevelopmental issues as Cameron,” Greeley said. Now that monogenic diabetes patients are being tracked, researchers will be able better to understand the particular challenges they face and work toward treatment.
In July 2010, the Kovler Diabetes Center held the first “Celebrating the Miracles” family forum in downtown Chicago for dozens of transitioned patients and their families. The Lundfelts were in attendance, as were families from around the world. Most of the families keep in touch through Facebook and the registry e-mail group, where they trade stories and monitor the progress of each other’s children, sharing information as they learn about the latest research being performed at the Medical Center.
“These physicians and the families they’ve helped are pioneers,” Geoff Lundfelt said. “We’re helping each other provide the answers for future generations.”
The Jaffes were at the “Celebrating the Miracles” forum, too, as supporters and key members of the organizing group. Lilly Jaffe ran into the children’s playroom and asked, “Where’s Cameron?” Cameron, who had just turned 6 years old the day before, ran toward Lilly. The two hugged as Alissa Lundfelt looked on, smiling. The story of Lilly’s treatment had led to a complete transformation for the Lundfelt family.
“Their story is our story,” Alissa said. “We all know each other and our children so intimately. It’s really created a family out of all of us.”
To learn more about the Monogenic Diabetes and the registry, please call 312-342-7808 or visit our website.
Posted: October 19th, 2011 | Author: kovlerdaily | Filed under: Diabetes Programs, Diabetes Resources, Kovler Diabetes Center Staff, Patient Stories, Research and Grants | No Comments »
This blog was written by Rob Mitchum, Senior Science Writer for the University of Chicago Medical Center. It originally appeared in the Science Life blog on October 14, 2011.
Almost everyone has experienced the boredom of sitting through someone’s vacation photos, forcing a wan smile as a friend hands you picture after picture of beaches, museums, and old buildings. But if you’ve been to the same destination as your friend, there’s an allure to seeing how their experience of a particular place compares to your own. Discussing a gelato stand you both visited outside the Uffizi gallery in Florence or debating the merits of ocean-side vs. sound-side in the Outer Banks can bring a friendship closer. But can that communal photo-sharing power be captured and channeled into improving people’s health?
Dr. Arshiya Baig
That concept is a novel component of assistant professor of medicine Arshiya Baig’s pilot project to improve diabetes outcomes in the Chicago Latino community, Picture Good Health/Imagínate una Buena Salud. Designed in cooperation with churches in the predominantly Mexican neighborhood of Little Village, Baig’s program offers focus group classes with Latinos diagnosed with diabetes, seeking to improve their diet, exercise, and disease control. At each of the eight weekly sessions, participants go through education, counseling, and activities to help manage their diabetes. But each meeting begins with a novel concept, called “photovoice,” that puts the storytelling potential of photography to use as a stimulant of healthy discussion.
“We thought we would do something fun, so we are giving disposable cameras to everyone in the intervention group, and they get to take photos of their life with diabetes,” Baig said. “Then each class starts off with a conversation around those photos. People can share stories, they can problem solve, and our class leader is trained to facilitate a conversation. It’s probably the most innovative part of the study.”
The concept of photovoice was not created by Baig, but it is typically used by researchers for different purposes. Typically, the idea of giving subjects cameras and asking them to document their situation is used as a “needs assessment” to help design an intervention. For example, one project asked teenagers in an urban area to photograph negative elements in their daily life and community. Researchers or policy makers could then look at those photos to find places where an intervention could make the largest impact, such as cleaning up abandoned buildings or providing more supervision during walks to school.
However, in Picture Good Health, the photovoice method is the intervention. Participants are told only to document things in their life that are relevant to living with diabetes. After the photos are developed, they can choose which ones to share with the group during the first half-hour of each week’s session. The photographer explains what the photo means to him or her, and then the group discusses from there.
Second-year Pritzker medical student Matthew Stutz joined Baig’s project this summer to start analyzing the photovoice component of the focus groups. He found that the participant’s photos covered a wide range of topics, from the obvious (food, diabetes medications) to more general influences such as their home, workplace, neighborhood, and family. A photo of loaves of white and wheat bread might kick off a group discussion of health grocery choices, or a picture of an ashtray could trigger participants to talk about the methods they have used to try and quit smoking. One man shared a picture of a park and said it reminded him of his deceased daughter, inspiring the other participants to talk about family members they had lost – a topic that wouldn’t typically be on the agenda for a diabetes intervention.
“I think of photovoice as an easy mechanism for someone to convey emotions, experiences, losses, gains, without having to verbalize it,” Stutz said. “By having a prop or a mechanism to share, I feel we can gain a lot more ground and depth and conversation.”
So far, Picture Good Health participants have given the photovoice technique rave reviews. A focus group facilitator wrote that “”[Participants] would not change anything. Because they [the photos] helped us remember the good and sad times.” Others commented that it made them feel more like a family with their fellow participants – who were strangers before the group classes started. As part of Baig’s project, the subjects will be surveyed again six months after completion of the course to measure both their diabetes control and the lasting impact of the sessions. But as the first 100 subjects go through classes, the photovoice intervention appears to be successful as both an icebreaker and an intervention.
“I was really impressed by the openness that people felt among strangers in this group, to share something so deep,” Baig said. “In the discussion, participants used the word ‘family,’ we’re a family now, and said ‘thank you for sharing’ to a participant; this is what we’re here for.”
Posted by – Rob Mitchum
If you want to learn more about the Picture Good Health program, or to make an appointment with a specialist at the Kovler Diabetes Center, please call 773-702-2371 or email email@example.com. You can also read more about the program in an earlier blog post.