For Patients and Caregivers
If you wish to find out about clinical research studies seeking lipedema patients and study participants, please fill out our Contact Us form and select the appropriate option (Research Volunteer).
SEE ALSO the Research Impact page for enrolling studies.
Due to limited staff, LF does not directly support patients - we focus where we can make a difference today (with research). We recommend the FDRS (Fat Disorders Research Society) for patients and caregiver support and our Resources page.
Lipedema is characterized by increased adipose tissue in the limbs, and the adipose tissue may be painful. There is a very wide manifestation of disease symptoms. The pain may be constant, may come and go, or only occur when pressure is applied to the adipose tissue. And the pain experienced may be very mild or severe. The mechanism of pain sensation is not currently understood.
Many people experience some amount of swelling (non-pitting edema).
To oversimplify the diagnosis, look for a 'cuff' at the ankle and wrist and check that the hands and feet do NOT swell via the Stemmer's Sign test.
Differentiation between venous disease (test via venous ultrasound), obesity (examine fat depot locations), lymphedema (possibly test via lymphoscintigraphy), lipedema and Dercum's Disease is important. The Diagnosing 1, Diagnosing 2, Primer, and Leg Swelling videos will be of use.
The tools listed on our Resources page should be reviewed in detail in order to familiarize yourself with lipedema, its diagnosis and its treatment.
It can be difficult for someone who does not have lipedema to understand what a person with lipedema is going through. Lipedema fat tissue can hurt, and it can hurt a lot. The unknowns of the disease are stressful. There are few treatments backed by research. The threat of loss of mobility is terrifying. Encourage your loved ones to seek medical and emotional help and to join a Facebook group with a vibe they enjoy.
what to do about lipedema
Because lipedema is not yet well understood, no one yet knows what will help people with lipedema best. Everyone's bodies are different, and as of now, we do not have any single formula that works for everyone. As you incorporate different treatments to see what works best, you should start each new thing slowly, one at a time, to see if it helps.
DO NOT STARVE YOURSELF. Eat better quality food in a healthy quantity.
Do not focus on weight, but do try to manage any swelling, and try to build muscle while protecting joints and ligaments in order to support your body and stay as active as possible. It is important to remember that there are a few categories of things that contribute to one's weight: food in the digestive track, muscle, regular fat, lipedema fat, fluid and even skin. It can be hard to determine which are changing.