The goal of The Fat Disorders Research Society, Inc. is to raise public awareness of these disorders– as well as to raise funds for research into the cause of these disabling disorders. The Fat Disorders Research Society, Inc. would like to invite the medical community to join in this research.

Fat Can Be Disabling

It is unknown just how many people suffer diseases resulting from fat disorders. Misdiagnosis is common because the symptoms can mimic other diseases.
Patients are often simply told to lose weight, exercise more and in the case of lipedema, adiposis dolorosa or familial multiple angiolipomatosis, that ‘fat doesn’t hurt’.
Even when there are visible lumps under the skin, the examiner may not investigate further and may simply determine that the patient has harmless fatty tumors (lipomas) that require no further treatment.  In fact, these lipomas or angiolipomas can be extremely painful when they are associated with fat disorders.
There are several disorders listed by NORD (National Organization for Rare Disorders) which involve the growth of abnormal fat and are physically debilitating. In general, these diseases are under-researched as well as under-diagnosed. Most medical professionals are not familiar with these disorders, and as a result, the patient may suffer in pain questioning their own symptoms.

Rule Out Other Diagnoses

Before you settle on a particular fat disorder diagnosis, make sure you are ruled out for other diseases that can cause changes in fat such as infections (Lyme’s disease) or an inflammation of the fascia (connective tissue) underlying the fat (fasciitis panniculitis syndrome or eosinophilic fasciitis). People with Madelung’s disease should have an evaluation of typical mitochondrial mutations (such as MERRF and MELAS).

People with Fat Disorders Need Directed Treatment and Recommendations

In many of the fat disorders, the wrong kind of exercise or treatment can do more harm than good. Exercise that is too strenuous can increase fatigue and pain in people with fat disorders. If your healthcare provider suggests exercise to improve your health, discuss with them what type of exercise would be best for you. People with any of the fat disorders do well with water exercise, use of a rebounder (mini-trampoline to move lymphatic fluid) or whole body vibration. Other non-impact exercise like walking or an elliptical trainer would also be good for those who are able. Stretching or breaking tissue during deep tissue massage or strenuous physical therapy may increase inflammation or damage to the fat tissue. Acupuncture is well-tolerated and works very well for some people with fat disorders but others complain of the needles aggravating the lipomatosis.

Nutrition

Fat stores toxins. Make sure your diet is healthy. Eating processed foods or foods containing substances that may increase inflammation such as MSG (monosodium glutamate) or other synthetic additives is counterproductive when trying to improve the health of your fat. Maintaining a diet high in omega-3-fatty acids can help immune cells function and decrease inflammation.

Research

Research in the area of fat disorders is sorely needed.  Only a few researchers around the world are involved in this area of research.  More research and more investigators are needed to find the genes for these diseases and their cures.