$1.5M Gift Seeks Cure for Fat Tissue Disorders
UA alumna Felicitie Daftuar has provided seed funding to the College of Medicine – Tucson through the Lipedema Foundation, of which she is the founder and executive director.

By David Mogollon, UA Department of Medicine
Feb. 5, 2016

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, University of Arizona alumna Felicitie Daftuar has provided a $1.5 million gift through the Lipedema Foundation, of which she is the founder and executive director. The money is to be used as seed funding to establish a new Treatment, Research and Education of Adipose Tissue, or TREAT, Program at the University of Arizona College of Medicine – Tucson.

TREAT will enable internationally noted UA researcher Dr. Karen Herbst, an associate professor of medicine in the Division of Endocrinology and an associate professor in medical imaging, to expand her efforts to better understand, diagnose and treat adipose tissue disorders. 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," Herbst said. "It’s pretty difficult for the medical community to accept that fact."

Lipedema, the most common ATD, affects an estimated 17 million U.S. women and 370 million women globally, according to the National Institutes of Health. Among men, lipedema is rare. Many lipedema sufferers may not be particularly obese and seem healthy with normal medical tests. Some ATD sufferers may experience diabetes along with cardiovascular, orthopedic and other health issues caused by being overweight.

"Many of these ladies have had knee replacement surgery due to joint damage," Herbst said. "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."

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.

Herbst plans to work closely with UA colleagues in the Department of Medical Imaging, the UA Lymphology Laboratories and 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.

The gift from the Lipedema Foundation is "a dream come true," Herbst said. "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."

The Lipedema Foundation’s generosity puts the UA closer to its goal of raising $1.5 billion during Arizona NOW, the comprehensive fundraising campaign distinguished by its unprecedented scope and focus on improving the prospects and enriching the lives of the people of Arizona and the world. Thanks to the generosity of nearly 85,000 distinct donors, the campaign is well ahead of pace, with more than 89 percent of the goal already raised.

Daftuar, who graduated from the UA in 2000 with a bachelor's degree in computer science, said she gets upset at physicians who are insensitive to the plight of women affected by ATDs.

"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."

Herbst, she said, is "really the only physician in the country, that I know of, who really gets it and does a good job of working with patients."

That’s why physician education, particularly early in their training, will be an important part of TREAT, 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 said, to assist in developing educational materials for the program.

Although she is wary to predict that a cure can be found, Daftuar said 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," she said. "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."

Extra info

Adipose tissue disorders, or ATDs, include:

  • Lipedema, the most common, characterized by subcutaneous adipose tissue, or SAT, that collects on the lower body. Many women with lipedema do not have metabolic diseases such as diabetes and are simply told to eat less and exercise more. This advice can result in eating disorders, anxiety and depression. Advanced lipedema sufferers also can acquire lymphedema, or swelling due to buildup of fluid in soft body tissues when the lymph system is damaged or blocked.
  • Dercum’s disease, which involves lumpy fibrotic SAT, or lipomas, anywhere on the body and is often accompanied by inflammation and pain.
  • Familial multiple lipomatosis, or FML, in which large masses or lipomas that generally are not painful occur in the SAT anywhere on the body. This condition is rare.
  • Madelung’s disease, also known as multiple symmetric lipomatosis, which is made up of abnormal fatty deposits around the neck, upper arms, thighs, abdomen and upper buttocks. It is the least common ATD.

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, contact Marianne Hadden at mariannehadden@email.arizona.edu or 520-626-4557.