what's new in 2016
2016 is a Big Year for Dr. Karen Herbst
Job Title: Research Technician - Division of Endocrinology
The Director of the Treatment, Research, Education, Adipose Tissue (TREAT) Program in the Department of Medicine at the College of Medicine, University of Arizona, is recruiting a Research Technician. The incumbent will be responsible for and coordinate all aspects of clinical research activities as part of the TREAT Program, including regulatory and contract issues, recruitment, informed consent, study procedures, data collection and documentation, creation and population of databases, study close out, coordination of meetings for TREAT members and organizing CME presentations, and would have close interactions with faculty members leading these research activities. The TREAT Program at the University of Arizona, College of Medicine is a first of its kind organization of exceptional faculty, with access to state-of-the-art facilities to collaborate on finding the cure for all subcutaneous adipose tissue (SAT) disorders beginning with lipedema . The purpose of this position is to assist in the planning and conduct of clinical research dedicated to the care of primarily adults with SAT disorders.
At the University of Arizona, we value our inclusive climate because we know that diversity in experiences and perspectives is vital to advancing innovation, critical thinking, solving complex problems, and creating an inclusive academic community. We translate these values into action by seeking individuals who have experience and expertise working with diverse students, colleagues and constituencies. Because we seek a workforce with diverse perspectives and experiences, we encourage minorities, women, veterans, and individuals with disabilities to apply. As an Employer of National Service, we also welcome alumni of AmeriCorps, Peace Corps, and other national service programs.
Outstanding UA benefits include health, dental, and vision insurance plans; life insurance and disability programs; paid vacation, sick leave, and holidays; UA/ASU/NAU tuition reduction for the employee and qualified family members; state and optional retirement plans; access to UA recreation and cultural activities; and more!
1. The TREAT program has begun at the University of Arizona (see below).
2. The Herbst Clinic will open in Tucson soon!
The goal of the The Herbst Clinic is to allow Dr. Herbst to see patients with adipose tissue disorders in a comfortable environment where compression garments, alternative lab testing and treatment protocols are available. The Cyclic Variations in Adaptive Conditioning (CVAC) Process will be available in the clinic starting in January 2016. The CVAC Process was shown to improve pain in people with Dercum's disease and has been used by many ladies with lipedema to improve blood flow and lymphatic drainage. My favorite quotes from two ladies who used the CVAC Process are "Best MLD I ever had" and "squeezed me like a lemon".
In order for the TREAT program and The Herbst Clinic to succeed, the following will happen:
1. Dr. Herbst will continue to see patients at the University of Arizona (UA) but on Mondays only (all day Monday). People with Friday afternoon appointments at the UA will be asked to move to Monday starting in February. Dr. Herbst will spend Tuesday - Friday working on the TREAT program. Anyone who comes for a clinic appointment at the UA and wants to be a part of the research program can do so once protocols are up and running. Stay tuned for more information.
New patient appointments are not available at the UA at this time in order to ensure that people with current appointments do not lose the opportunity to have an appointment as we transition all appointments to Monday. Once the transition is complete, Dr. Herbst will open to new appointments at the UA.
2. Most of Dr. Herbst's time will be spent on the TREAT program.
3. The Herbst Clinic: Dr. Herbst will see a few patients in her clinic every week and on a cash basis only (to start). Teleconferences will also be available internationally (yes Canada too!) and for people in some states (California for sure).
The CVAC will be open for use most days of the week.
4. More information will be posted here as it is available including where to call for participation in the TREAT program as well as where to call for appointments at The Herbst Clinic. A URL for the Herbst Clinic is forthcoming which will include location.
5. As part of the TREAT program, Dr. Herbst will be training healthcare providers to become adept in the care of people with adipose tissue disorders!
The TREAT PROGRAM
See the full article at this URL
Cure for Fat Tissue Disorders Sought in UA Alumna’s $1.5 Million Gift to Fund College of Medicine – Tucson Research and Education Program
UA alumna Felicitie Daftuar’s gift will allow internationally noted endocrinologist Dr. Karen Herbst to establish a new UA College of Medicine – Tucson program to improve imaging and phenotyping of fat tissues and develop educational tools to help physicians better recognize, diagnose and treat patients.
For more about this article Contact: David Mogollón, (520) 626-1137 Dec. 15, 2015
To Donate Contact:
Marianne Capp Hadden, MS, MBA
Director of Development
University of Arizona Health Sciences Center
TUCSON, Ariz. – Obese people aren’t always big because they eat too much. Some types of fat tissue won’t go away no matter how much one diets or exercises. And you don’t necessarily have to be large or overweight to suffer from these conditions.
To aid the study of potential genetic, metabolic and hormonal causes behind the accumulation of atypical fat tissue, Felicitie Daftuar, a 2000 UA computer science graduate, has provided a $1.5 million gift through her role as founder and executive director of the Lipedema Foundation as seed funding to establish a new Treatment, Research and Education of Adipose Tissue (TREAT) Program at the University of Arizona College of Medicine – Tucson.
The TREAT Program enables internationally noted UA researcher Karen Herbst, MD, PhD, an associate professor of medicine in the Division of Endocrinology, to expand her efforts to better understand, diagnose and treat adipose tissue disorders (ATDs). Most sufferers are women, although some men are affected as well. ATDs involve growth and retention of fatty tissue, which often starts at key life shifts in the body’s metabolism, such as puberty, pregnancy or menopause.
“People with fat disorders have excess fat, or fatty tissue, on their bodies that cannot be lost by lifestyle changes,” Dr. Herbst said. “It’s pretty difficult for the medical community to accept that fact.”
Among ATDs are:
· Lipedema, the most common, is characterized by subcutaneous adipose tissue (SAT) that collects on the lower body. Many women with lipedema do not have metabolic diseases like diabetes and are simply told to eat less and exercise more. This advice can result in eating disorders, anxiety and depression. Advanced lipedema sufferers can also acquire lymphedema, or swelling due to buildup of fluid in soft body tissues when the lymph system is damaged or blocked.
· Dercum’s disease involves lumpy fibrotic SAT, or lipomas, anywhere on the body and is often accompanied by inflammation and pain.
· In familial multiple lipomatosis (FML), large masses or lipomas that are generally not painful occur in the SAT anywhere on the body. This condition is rare.
· The least common, Madelung’s disease, also known as multiple symmetric lipomatosis, is made up of abnormal fatty deposits around the neck, upper arms, thighs, abdomen and upper buttocks.
Dr. Herbst’s patients — including Daftuar — are mostly from the United States, but also come for treatment from as far as Europe, the Mideast and Australia. She promotes a variety of regimens that incorporate dietary education, supplements, medication, compression garments, exercise (especially in water), whole-body vibration and gentle massage to get lymphatic nodes pumping, as well as liposuction and other surgery when required.
The TREAT Program is a first step in creating a center for ATDs study to focus related research at the University of Arizona to help an estimated 17 million U.S. women and 370 million women globally who suffer from lipedema, according to the National Institutes of Health. Among men, lipedema is rare. A lot of lipedema sufferers may not be particularly obese, but seem healthy with normal medical tests. Or they and other ATDs sufferers may experience diabetes — including 16 percent of Dercum’s disease patients who have Type 2 diabetes — cardiovascular, orthopedic and other health issues from being overweight.
“Many of these ladies have had knee-replacement surgery due to joint damage,” Dr. Herbst said. “Dercum’s disease also is associated with autoimmune disease. And, in lipedema, we see a lot of venous disease, problems with veins. These venous insufficiencies — that can manifest as varicose veins — also cause swelling around the ankles. So physicians may say, ‘Oh, you’ve got problems with your veins,’ but don’t recognize the lipedema. That’s not to mention the psychological damage of people just thinking they are ‘fat’ when all they’re eating is salad. It’s pretty tough on them.”
Dr. Herbst’s goal is to improve medical imaging and phenotyping of normal and abnormal fatty tissue, and to educate health-care providers to better recognize, diagnose and care for people with ATDs. As such, she’s received a dual appointment with the UA Department of Medical Imaging and expects to work closely with Diego Martin, MD, PhD, the UA’s Cosden Professor and department chair, and Bobby Kalb, MD, UA associate professor, MRI director and chief of body imaging. She’ll also work with UA Lymphology Laboratories co-directors Marlys Witte, MD, whose work originally attracted Dr. Herbst to the UA in 2013, and Michael Bernas, and David Harris, PhD, executive director of the UA AZiCATS Biospecimen Initiative, a biobank from which she plans to make her data available to other ATDs researchers to speed up advances in the field.
Dr. Herbst expressed great appreciation for the gift from the Lipedema Foundation. “It’s a dream come true. I’ve had a vision of how much we could accomplish if I had the time and funding to actually do research on lipedema and figure it out. Now, I have my chance. I don’t think too many people get an opportunity like this.”
A problem with ATDs, said Daftuar, who also is past president of the Fat Disorders Research Society (FDRS), a nonprofit created in 2009 to promote research, education and awareness, is getting clinicians to recognize the conditions as anything beyond obesity. She sought treatment after her second child’s birth when she gained “5 pounds in five days” and noticed a “fat pad” on the inside of her knee. Her obstetrician and doctor did not recognize it, one dismissing her concerns as post-partem depression.
“I wasn’t depressed and I’m not obese,” said Daftuar. With a normal body mass index of 20 (NIH considers a BMI above 30 as obese), she admitted stories of most if not all ATDs sufferers are worse than hers in terms of the physical and mental stress they’ve endured.
Still, it bothered her that she couldn’t get any answers. Medical imaging drew no conclusions, as the tissue is difficult to image, whether by ultrasound or MRI. She finally came across the word lipedema while searching images online, but found little information other than “unprofessional websites and some biased blogs.” A medical concierge service she hired and a physical therapist later confirmed she had lipedema but told her she couldn’t do anything “other than wear a compression garment.” Then, she met Dr. Herbst and attended her first lipedema conference.
Daftuar recalls accounts she heard “from the many beautiful women” she befriended via FDRS and other lipedema organizations. Some had weight-loss surgery only to find it did nothing to get rid of fat in their legs or arms. Others turned to fitness to take their lives back but may still weigh 300 pounds. Even triathletes with FML notice only a slight decrease in fat tissue during the hardest part of their training just before a race, Dr. Herbst said. Such stories — both heart rending and uplifting since they’re tales of survival and determination — are posted as YouTube video dialogs at the FDRS website.
Daftuar gets upset at physicians who are insensitive to these women’s plight. “There’s a lot of obesity,” she acknowledges. “But you go to your doctor and they say, ‘Stop eating’ or ‘Clean up your diet.’ These are people who record everything they eat. Then they go to their doctor and say, ‘Here’s my proof. I only eat 800 or 1,200 calories a day.’ And the doctor tells them, well, cut back another hundred. That’s not a constructive conversation. These women, they can be obese and anorexic at the same time.”
She noted other physicians, like Dr. Herbst, insist patients begin eating and developing a healthy relationship with food. “She’s really the only physician in the country, that I know of, who really gets it and does a good job of working with patients,” Daftuar said.
That’s why physician education, particularly early in their training, is important to the TREAT Program, Dr. Herbst said. She has fellows on staff and plans to hire a primary care physician, which should be the first level of treatment for most ATD patients, she added, to assist in developing educational materials for the program. They’ll also take over Dr. Herbst’s clinical practice so patient needs will still be met.
Daftuar is funding other efforts as well. This includes a program at a major university in New York and another at the Royal College of General Practitioners at St. George’s Hospital in London. This year, she and FDRS are funding three Fellowships for Lipedema and Dercum’s Disease study worth up to $98,000 each, utilizing the Lymphatic Education & Research Network to manage the process. A fourth fellowship will be funded through the Lipedema Foundation.
Daftuar says “coming full circle” to the University of Arizona to find better treatment for ATDs may seem a bit ironic. Although wary to predict a cure can be found, she hopes the research can make great strides in helping improve the lives of those people affected.
“I didn’t realize until recently the long lymphatics research and clinical history at the UA College of Medicine – Tucson. Dr. Marlys Witte and Michael Bernas have been key members of the lymphatic research community for decades. And the UA already has biobank capabilities. Those are real strengths, and that’s why I’m glad we’re able to fund the TREAT Program at the University of Arizona. It’s just all a big coincidence that I happened to graduate from there.”
The TREAT Program has broad goals and a dual mandate to not only research ATDs conditions but to promote improved patient care among a large number of health-care providers. More funds for the program are being sought to purchase imaging, investigational and patient-care equipment, to hire additional researchers and medical staff and to enhance current technologies. For example, a sophisticated patient registry could be integrated with tissue samples deposited in the UA biobank to enable sharing of de-identified patient data across multiple institutions. For more information on how to donate, please contact Marianne Hadden at firstname.lastname@example.org or (520) 626-4557.
About the Lipedema Foundation
The Lipedema Foundation is funding multiple basic and translational research projects at multiple top-tier universities and hospitals in order to define, diagnose and treat lipedema and related conditions, such as Dercum’s disease. Its focus is furthering knowledge of adipose and lymphatic biology, and spanning physiology, genomics, immunology and endocrinology. Learn more at www.lipedema.org
About the Fat Disorders Research Society
Founded in 2009, the Fat Disorders Research Society is a not-for-profit organization dedicated to improving the quality of life for people affected by adipose tissue disorders through research, education, advocacy and collaboration. FDRS provides educational resources for millions of people who suffer from lipedema, Dercum’s disease and other fat disorders. It supports research that can enrich the medical community's understanding of ATDs. More than 100 attendees are expected for the next FDRS Conference, April 8-10, 2016, in St. Louis. Learn more at www.fatdisorders.org
About the University of Arizona Health Sciences
The University of Arizona Health Sciences is the statewide leader in biomedical research and health professions training. The UA Health Sciences includes the UA Colleges of Medicine (Phoenix and Tucson), Nursing, Pharmacy, and the Mel and Enid Zuckerman College of Public Health, with main campus locations in Tucson and the growing Phoenix Biomedical Campus in downtown Phoenix. From these vantage points, the UA Health Sciences reaches across the state of Arizona and the greater Southwest to provide cutting-edge health education, research, patient care and community outreach services. A major economic engine, the UA Health Sciences employs almost 5,000 people, has nearly 1,000 faculty members and garners more than $126 million in research grants and contracts annually. For more information, see: http://ahsc.arizona.edu
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