Medically Reviewed by Dr. K on 13 May 2022.
Table of contents
Lipodystrophy is a condition in which the body has trouble using and storing fat. If you're not born with it, it is referred to as acquired. It also affects the fat right under the skin, which can alter your appearance. It can also cause other physical changes in the body.
Lipodystrophy is a disorder that affects certain HIV patients (LD-HIV). That may be because of the medications they're on or because of the disease itself.
Other acquired lipodystrophies are:
- Acquired generalized lipodystrophy (AGL), or Lawrence syndrome
- Acquired partial lipodystrophy (APL), also called progressive lipodystrophy or Barraquer-Simons syndrome
- Localized lipodystrophy
AGL is most frequent in adolescents, but it can also affect adults. APL generally begins between the ages of 8 and 10. Girls are three times more likely than boys to have these disorders. Both trigger a person's face to lose weight, making them seem ill or even older than they are. Anyone, at any age, may experience localised lipodystrophy. A slight dimple caused by localised lipodystrophy may seem unusual, but it is unlikely to cause any other complications.
People with larger areas of acquired lipodystrophy, on the other hand, do not have enough of the hormone leptin in their bodies because fat tissue produces it. Leptin signals the body when you've had enough calories and when it's time to produce insulin.
Fat can also collect in areas that it shouldn't, such as the blood, heart, liver, and kidneys. Other issues, such as diabetes, high cholesterol and triglycerides, liver disease, and kidney failure, can arise depending on the type of lipodystrophy an individual has.
Doctors will assist you with dealing with these issues. If appearances are a concern, cosmetic surgery could be an option.
Doctors aren't quite sure what causes acquired lipodystrophy, but some reasons include:
- Infections: measles, influenza, bacterial mononucleosis, or hepatitis
- Autoimmune disease: When your immune system fails your organs
- Injections or strain on the same part of the body on a daily basis.
- An injury
People with diabetes, for example, who must administer insulin on a regular basis experience localised lipodystrophy in the places where they are administering themselves injections. That's a reason to switch injection sites often.
Although all types of acquired lipodystrophy result in a reduction of body fat, what it means for each person varies. The type your child has will affect:
- Where it happens
- How much fat is lost
- Other effects on their body
They'll lose fat all over their body, including their face, arms, thighs, hands, and even the soles of their feet, by shedding it from under the skin. They can appear to be very muscular, with muscles visible under their skin.
AGL allows children to be chronically hungry and to grow rapidly. If their hormone balance is off as they continue to develop, adults can have broad hands and feet and a solid, square jawbone. It's likely that their sex organs are bigger than normal (clitoris and ovaries, penis and testicles).
A woman's cycle can be irregular or nonexistent. Polycystic ovary syndrome is a possibility (PCOS). They'll more likely have more hair on their upper lip and chin than normal.
Patches of dark, velvety skin may occur under the arms, on the abdomen, around the belly button or nipples, or on the hands and feet in people with AGL.
A person's body may have difficulty using sugar or regulating blood sugar and triglyceride levels as a result of fat loss. It's likely because they have a big liver or spleen.
Only the upper body, on both sides, is affected by this kind. It normally begins with the face and progresses to the neck, arms, and chest.
There appears to be a dent in the skin, but the skin itself appears to be in good condition. The size can vary. It may be in a single position or multiple. There may be tender or uncomfortable bumps as well.
Getting a Diagnosis
When you see the doctor, he or she will perform a detailed examination and ask you questions about your child's health:
- What symptoms have you noticed?
- When did you first see them?
- Are changes in how they look only in certain areas, or all over?
- Have they had panniculitis — swollen bumps under their skin or a bumpy red rash?
- Do they have diabetes?
- What other health problems or recent injuries have they had?
- Have you had their blood sugar, cholesterol, and triglyceride levels checked?
Tests of body fat can confirm the diagnosis.
Skin biopsy: A doctor will cut a small piece of skin and test the cells under a microscope for a skin biopsy.
Your doctor may also look for a fat-loss pattern that includes:
- Skinfold thickness measurements, determining how much skin they can pinch between their fingertips at different body locations
- A special X-ray that measures bone mineral density
- A special whole-body MRI (magnetic resonance imaging) that uses powerful magnets and radio waves to make pictures showing tissues with fat
- Blood sugar levels
- Kidney health
- Fat levels
- Liver enzymes
- Uric acid
If APL is suspected, blood will be examined for evidence of a specific way the body attacks fat cells.
Urine tests: to check for kidney problems.
Questions for Your Doctor
- What type of lipodystrophy is this?
- Do you know what caused this?
- Do we need any more tests?
- How many other people with this condition have you treated?
- What's the best way for us to treat it?
- What other symptoms should we watch for?
- Do we need to see any other doctors?
- Is there anything I can do that will help my child look and feel “normal"?
- Can we be part of a lipodystrophy research trial?
Since you won't be able to restore the lost body weight, your target will be to prevent illness complications. A healthy lifestyle is important.
Lipodystrophy patients should follow a low-fat diet. Kids, on the other hand, need sufficient calories and proper nutrition in order to grow properly. Exercise can also assist the child in maintaining his or her fitness. Physical exercise tends to maintain blood sugar levels in balance and fat from accumulating dangerously.
Meterleptin injections (Myalept) may be available to people with AGL to substitute the lost leptin and help avoid other diseases. Statins and omega-3 fatty acids, which can be present in certain animals, can also help reduce cholesterol and triglycerides.
If your child has or has diabetes, he or she may need to take insulin or other medications to keep their blood sugar under check.
Oral birth control and hormone replacement treatment for menopause are not approved for women with AGL because they can increase the levels of such fats.
To lighten and smooth dark skin spots, your doctor can prescribe a lotion or cream. Bleach and skin scrubs sold over the counter are unlikely to work and can irritate the skin.
Your child may be able to get cosmetic surgery when they get older to help fill out their face with skin grafts from their elbows, chest, or scalp. To further reshape facial expressions, doctors can use implants and filler injections. Liposuction may be used to remove excess fat deposits in people with APL, but fat can reappear. Consult the doctor to determine which approach to their appearance is appropriate and when.
Taking Care of Your Child
Since this disorder affects your appearance, compassion and care are just as important as treatment. Maintaining your child's health and being supportive are the most important things you can do.
Set the tone for the rest of the group. Have a good attitude and an open mind. People may be unaware of how to respond or what to say in order to prevent prying, insulting, or humiliating you and your child. When anyone inquires about them, be straightforward about their condition.
Do what you can to improve their self-esteem. Instead of praising someone's appearance, consider celebrating them for their accomplishments.
Encourage friendships. Kids will be kids, expect them to be exposed to mean looks and comments. You may use role-playing and humour to help them learn how they'll react.
Consider professional counseling. Someone with experience will support the child and family with managing out their emotions as they cope with the disease's challenges.
What to Expect
People with AGL will lose most or all of their body fat over time. APL typically stops after a few years.
The more weight you lose, the more debilitating your illness becomes. Despite this, many individuals with lipodystrophy remain active and positive.
To avoid risks, you'll need to consult closely with your doctor. People with AGL, for example, are more likely to have heart and liver problems. Diabetes can be difficult to treat. They could develop autoimmune diseases including vitiligo (light-colored skin spots), rheumatoid arthritis, and a type of hepatitis.
Insulin-related complications are less prevalent in people with APL than they are in people with AGL. However, it may cause kidney failure or even death, as well as drusen, small fat deposits in the back of the eyes that may be linked to age-related macular degeneration (AMD). Women's hips and thighs can become disproportionately large. Autoimmune diseases, such as rheumatoid arthritis and celiac disease, have been linked to AGL and APL.
Lipodystrophy is being studied by researchers, and they may discover new ways to treat it.
Lipodystrophy United is a safe place to start if you're looking for a support network. It includes disease information as well as an online community for people with lipodystrophy and their families.
Referenced on 2.3.2021:
- Orphanet: “Acquired generalized lipodystrophy," “Partial acquired lipodystrophy."
- Medscape: “Localized Lipodystrophy."
- FDA: “FDA approves Myalept to treat rare metabolic disease."
- Lipodystrophy United: “About Lipodystrophy."
- NORD Physician Guides: “Acquired Lipodystrophies."
- University of Texas Southwestern Medical Center: “Lipodystrophy," “Lipodystrophy Therapies," “Acquired: Generalized Lipodystrophy (AGL; Lawrence Syndrome)," “Acquired: Partial Lipodystrophy (Barraquer-Simons Syndrome)," “Acquired: Localized."
- KidsHealth: “Acanthosis Nigricans."
- AACE Lipodystrophy Detection Consensus Statement, Endocrine Practice, January-February 2013.
- Endocrine Society, Resource Room Slide Series: “Lipodystrophy: Metabolic and Clinical Aspects."
- DermNet NZ: “Lipodystrophy."
- Kumar, R. Indian Pediatrics, January 2000.