Cure for Fat Tissue Disorders Sought in UA Alumna’s $1.5 Million Gift

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 mariannehadden@email.arizona.edu 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