Dercum's Disease - NORD (National Organization for Rare Disorders) (2023)

Dercum’s Disease

NORD gratefully acknowledges Karen Herbst, PhD, MD, Associate Professor, Departments of Medicine, Pharmacy and Medical Imaging, Division of Endocrinology, University of Arizona College of Medicine, for assistance in the preparation of this report.

Synonyms of Dercum’s Disease

  • adiposis dolorosa
  • fatty tissue rheumatism
  • juxta-articular adiposis dolorosa
  • lipomatosis dolorosa
  • morbus Dercum's

General Discussion

Dercum’s disease is a rare disorder characterized by multiple, painful growths of fatty tissue (lipomas). Fat tissue is known as loose connective tissue, hence Dercum’s disease is a loose connective tissue disease. The lipomas mainly occur on the trunk, the upper arms and upper legs and are found just below the skin (subcutaneously) but also can be found deeper in the body coupled to muscle, tendons, ligaments or bone by connective tissue. Pain associated with Dercum’s disease can often be severe. Pain may be caused by lipomas pressing on nearby nerves or inflamed connective tissue, also called fascia, which is commonly associated with the lipomas. Dercum’s disease mainly occurs in adults and more women are affected than men. Some affected individuals may also experience weight gain, depression, lethargy, and/or confusion. The exact cause of Dercum’s disease is unknown.

Signs & Symptoms

The characteristic finding of Dercum’s disease is the formation of multiple, painful growths consisting of fatty tissue (lipomas) that are found just below the surface of the skin but also deep. Lipomas in people with Dercum’s disease may be found in any part of the body, although they are rare in the head, neck, hands and feet. The trunk, upper arms and upper legs are most often affected. The lipomas can be the size of a pea or as large as a grape, plum or fist. Dercum’s disease may occur in one or more people in a family with familial multiple lipomatosis (FML Type), may occur due to angiolipomas which are known to be painful (angiolipoma type) or may occur as small diffuse (widespread) pea-sized or larger lipomas anywhere in subcutaneous fat tissue especially over the ribs and including around joints due to the presence of inflammation in the body from any cause (healing disorder type). Pain may vary from mild discomfort when a growth is pressed or touched to severe pain that is disproportionate to the physical findings; pain must be present for at least three months. Some affected individuals feel that “all fat hurts.” Pain can last for hours and may come and go or last continuously. In severe cases, pain may worsen with movement. Many people with Dercum’s disease describe exacerbations or “flares” of pain that may be accompanied by worsening of symptoms such as fatigue and “brain fog”. The exact reason for pain associated with Dercum’s disease is unknown but may occur because the lipomas press on nearby nerves or because the fascia is inflamed. The lipomas associated with Dercum’s disease have more connective tissue than non Dercum’s disease fat. Connective tissue (fascia) in fat has more pain sensors than muscle, for example, and when tight or inflamed, can cause pain as in fibromyalgia. Fibromyalgia is not uncommon in people with Dercum’s disease.

Some individuals with Dercum’s may experience swelling of various areas of the body, especially the hands, but often one arm or leg may be swollen and therefore more painful. Swelling occurs for no apparent reason, though on imaging, the lymphatic system can be slow to pump in the painful limb compared to the less painful limb, or frank lymphedema may be present. The pain may disappear without treatment but any manual therapy such as massage or manual lymphatic drainage can help. Significant weight gain is a common occurrence for most individuals affected by Dercum’s disease and needs to be treated to avoid progression to pre-diabetes or diabetes.

Additional symptoms may occur in individuals with Dercum’s disease including fatigue, generalized weakness, a tendency to bruise easily, headaches, irritability, and stiffness after resting, especially in the morning, gastrointestinal symptoms, palpitations and shortness of breath. An association with bouts of depression, memory or concentration problems, anxiety, and a susceptibility to infection has been noted in some cases.

Additional reports in the medical literature have linked Dercum’s disease to a variety of conditions including arthritis, high blood pressure (hypertension), congestive heart failure, sleep disorders, dry eyes, and myxedema, a condition due to an underactive thyroid that is characterized by dry skin, swelling around the lips and nose, mental deterioration and infection.

Causes

The exact cause of Dercum’s disease is unknown. In most cases, Dercum’s disease appears to occur spontaneously for no apparent reason (sporadic), though causes of inflammation should be sought. One case reported the development of Dercum’s disease in a man after trauma (motor vehicle accident).

Some reports in the medical literature have suggested that Dercum’s disease may be an autoimmune disorder- a disorder in which the body’s immune system mistakenly attacks healthy tissue. Disturbances in endocrine function and improper breakdown (metabolism) of fat have also been proposed as potentially playing a role the development of the disorder. One case reported in the medical literature was linked to the use of high-doses of corticosteroids and some cases have been linked to infection including Lyme disease or Valley fever (coccidioidomycosis).

Some cases of Dercum’s disease have run in families and several reports in the medical literature cite the possibility that the disorder may be inherited as an autosomal dominant trait in these cases (FML type or angiolipomatosis type). Genetic diseases are determined by the combination of genes for a particular trait that are on the chromosomes received from the father and the mother.

Dominant genetic disorders occur when only a single copy of an altered gene is necessary for the appearance of the disease. The altered gene can be inherited from either parent, or can be the result of a new mutation (gene change) in the affected individual. The risk of passing the altered gene from affected parent to offspring is 50 percent for each pregnancy. The risk is the same for males and females.

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Affected Populations

Dercum’s disease affects females more often than males with medical publications citing the disease as 5-30 times more common in women. Dercum’s disease can affect individuals of any age with an average age of 34 years in one medical publication. Although an extremely rare occurrence, it has been reported in children. The prevalence of Dercum’s disease is unknown. The disorder is underdiagnosed, making it difficult to determine its true frequency in the general population. Dercum’s disease was first described in the medical literature in 1882 by an American neurologist named Francis Xavier Dercum.

Related Disorders

Symptoms of the following disorders can be similar to those of Dercum’s disease. Comparisons may be useful for a differential diagnosis.

Madelung’s disease, also known as multiple symmetric lipomatosis, is a rare disorder affecting uncoupling protein-1 and possibly brown fat tissue. Madelung’s disease results in the abnormal accumulation of fat deposits or lipomas around the neck, shoulders, upper arms and upper back. Adult male alcoholics are most often affected, although women and people who do not drink can also develop Madelung’s disease. (For more information on this disorder, choose “Madelung’s” as your search term in the Rare Disease Database.)

Fibromyalgia is a chronic disorder characterized by pain throughout the muscles of the body and abnormally persistent episodes of fatigue. The pain may begin gradually or have a sudden onset. Additional symptoms may include muscle spasms and stiffness. The parts of the body most frequently affected are the back of the neck, shoulders, lower back, elbows, hips, and/or knees. In addition, small specific areas known as “tender points” are typically painful when pressure is applied to them. Some people with fibromyalgia may also experience chest pain, difficulty concentrating, headaches, painful and/or frequent urination, diarrhea, constipation, numbness of the mouth, and/or unrefreshing (non-restorative) sleep.

Familial multiple lipomatosis is a rare genetic disorder characterized by the formation of multiple growths of fatty tissue (lipomas) that most often affect the trunk, arms and upper leg. The size and number of lipomas varies from person to person. Some individuals may develop hundreds of small lipomas that do not cause symptoms (asymptomatic), and are often found in similar locations on one side of the body compared to the other side (symmetric). Unlike Dercum’s disease, the lipomas do not cause pain. The neck and shoulders are usually not affected. Onset of this disorder is usually during adolescence. Familial multiple lipomatosis is inherited in an autosomal dominant pattern. One or more members of a family with familial multiple lipomatosis may go on to develop pain in the lipomas along with additional signs and symptoms consistent with Dercum’s disease.

Angiolipomatosis is a rare disorder characterized by multiple lipomas with increased numbers of blood vessels that contain fibrin clots, and larger numbers of mast cells. Angiolipomas are known to be painful and hence people with angiolipomas are said to have Dercum’s disease, angiolipomatosis type. Angiolipomas may be inherited in an autosomal dominant manner.

Several disorders are characterized by the development of benign (noncancerous) growths consisting of fatty tissue (lipomas) including Proteus syndrome, PTEN hamartoma syndrome, and Gardner syndrome. These disorders often have additional symptoms that can distinguish them from Dercum’s disease. (For more information on this disorder, choose the exact disorder name as your search term in the Rare Disease Database.)

Lipedema is a common fat disorder in women where increased subcutaneous fat grows to excess on the limbs. Lipedema fat can also be painful especially when touched. A woman with lipedema may also have Dercum’s disease and obesity. The disproportion of a larger lower body compared to the trunk is uniquely classic for lipedema. The pain experience is very individual therefore pain cannot be used as a decisive criterion for a diagnosis of Dercum’s disease.

Diagnosis

A diagnosis of Dercum’s disease is suspected based on a detailed patient history, a thorough clinical evaluation and identification of characteristic multiple lipomas. The distribution of the lipomas is important in distinguishing Dercum’s disease from the other disorders involving lipomas. Surgical removal and microscopic study (biopsy) of affected tissue confirms that these growths are lipomas.

Standard Therapies

Treatment

(Video) Dercum's Diaries Episode 1

No specific treatment exists for Dercum’s disease. Treatment is directed toward the specific symptoms that are apparent in each individual and is primarily focus on easing the characteristic painful episodes.

Various painkillers (analgesics) have been tried with limited effectiveness. Injections of corticosteroids have also been used to treat individuals with Dercum’s disease. However, in one reported case in the medical literature, the use of high-doses of corticosteroids was linked as a possible cause of the disease. Intravenous administration of the pain reliever lidocaine and/or ketamine may provide temporary relief from pain in some people.

Surgical excision of lipomas may temporarily relieve symptoms although the generation of inflammation (part of the healing process) during and after the surgery may induce more lipomas to develop in that area. Liposuction has been used as a supportive treatment for some individuals with Dercum’s disease and may provide an initial reduction in pain and improvement in quality of life. These effects may lessen over time.

Psychotherapy and consultation with pain management specialists may be helpful for enabling affected individuals to cope with long-term intense pain. Other treatment is symptomatic and supportive.

Investigational Therapies

Two individuals with Dercum’s disease who received interferon alfa-2b for hepatitis C virus infection saw improved symptoms associated with Dercum’s disease. Reduction of the inflammation associated with infection with the hepatitis C virus may also have provided benefit. More research is necessary to determine the long-term safety and effectiveness of interferon alfa-2b as a potential therapy for this disorder.

Alternative approaches including acupuncture, hypnosis, biofeedback, and cognitive behavior therapy have also been tried for individuals with Dercum’s disease.

One patient had a reduction in pain and weight from the use of a manual therapy for the lymphatic system (manual lymphatic drainage therapy) combined with the use of a pain medication called pregabalin.

Information on current clinical trials is posted on the Internet at www.clinicaltrials.gov. All studies receiving U.S. government funding, and some supported by private industry, are posted on this government web site. One company with a new drug on this website, RZL-012, has been approved by the FDA to move forward to study this drug as an orphan drug for Dercum disease.

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Some current clinical trials also are posted on the following page on the NORD website:
https://rarediseases.org/for-patients-and-families/information-resources/news-patient-recruitment/

For information about clinical trials sponsored by private sources, contact:
www.centerwatch.com

For information about clinical trials conducted in Europe, contact:
https://www.clinicaltrialsregister.eu/

NORD Member Organizations

Other Organizations

  • American Chronic Pain Association
    • P.O. Box 850
    • Rocklin, CA 95677 USA
    • Phone: (916) 632-0922
    • Toll-free: (800) 533-3231
    • Email: [emailprotected]
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  • Genetic and Rare Diseases (GARD) Information Center
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    • Bethesda, MD 20892-2560
    • Phone: (301) 496-3583
    • Email: [emailprotected]
    • Website: http://www2.niddk.nih.gov/

References

TEXTBOOKS

Herbst KLH. Subcutaneous Adipose Tissue Diseases: Dercum Disease, Lipedema, Familial Multiple Lipomatosis and Madelung Disease. In: Feingold KR, Anawalt B, Boyce A, Chrousos G, Dungan K, Grossman A, Hershman JM, Kaltsas G, Koch C, Kopp P, Korbonits M, McLachlan R, Morley JE, New M, Perreault L, Purnell J, Rebar R, Singer F, Trence DL, Vinik A, Wilson DP, editors. Endotext [Internet]. South Dartmouth (MA): MDText.com, Inc.; 2000-2019 Dec 14.

Campen RB. Adiposis Dolorosa. NORD Guide to Rare Disorders. Lippincott Williams & Wilkins. Philadelphia, PA. 2003:303.

JOURNAL ARTICLES

Beltran K, Wadeea R, Herbst KL. Case report: Infections preceding the development of Dercum disease. ID Cases 2020;19:e00682

Hao D, Olugbodi A, Udechukwu N, Donato AA. Trauma-induced adiposis dolorosa (Dercum’s disease). BMJ Case Rep. 2018; :bcr-2017-223869.

Naviaux RK. Metabolic features and regulation of the healing cycle-A new model for chronic disease pathogenesis and treatment. Mitochondrion 2018; 9:30105.

Beltran K, Herbst KL. Differentiating lipedema and Dercum’s disease. Int J Obes. (Lond) 2017; 41:240-245.

Tins BJ, Matthews C, Haddaway M, Cassar-Pullicino VN, Lalam R, Singh J, Tyrrell PN. Adiposis dolorosa (Dercum’s disease): MRI and ultrasound appearances. Clin Radiol. 2013; 25:00199.

Hansson E, Svensson H, Brorson H. Review of Dercum’s disease and proposal of diagnostic criteria, diagnostic methods, classification and management. Orphanet J Rare Dis. 2012;7:23.

Hansson E, Manjer J, Svensson H, Brorson H. Quality-of-life in patients with Dercum’s disease before and after liposuction. J Plast Surg Hand Surg. 2012; 46:252-256. doi: 210.3109/2000656X.2002012.2698417.

Herbst KL. Rare adipose disorders (RADs) masquerading as obesity. Acta Pharmacol Sin. 2012; 33:155.

Lange U, Oelzner P, Uhlemann C. Dercum’s disease (Lipomatosis dolorosa): successful therapy with pregabalin and manual lymphatic drainage and a current overview. Rheumatol Int. 2008; 29:17.

Campen RB, Sang CN, Duncan LM. Case records of the Massachusetts General Hospital. Case 25-2006. A 41-year-old woman with painful subcutaneous nodules. N Engl J Med. 2006;355:714-722.

Wortham NC, Tomlinson IP. Dercum’s disease. Skinmed. 2005;4:157-62.

(Video) Dercum's Diaries Episode 2

Campen R, Mankin H, Louis D, et al. Familial occurrence of adiposis dolorosa. J Am Acad Dermatol. 2001;44:132-136.

Devillers AC, Orangje AP. Treatment of pain in adiposis dolorosa (Dercum’s disease) with intravenous lidocaine: a case report with a 10-year follow-up. Clin Exp Dermatol. 1999;24:240-241.

Berntorp E, Berntorp K, Brorson H, et al. Liposuction in Dercum’s disease: impact on haemostatic factors associated with cardiovascular disease and insulin sensitivity. J Intern Med. 1998;243:197-201.

Gonciarz A, Mazur W, Hartleb J, et al. Interferon alfa-2b induced long-term relief in two patients with adiposis dolorosa and chronic hepatitis C. J Hepatol. 1997;27:1141.

Cantu JM, Ruiz-Barquin E, Jimenez M, et al. Autosomal dominant inheritance in adiposis dolorosa (Dercum’s disease). Humangenetik. 1973;18:89-91.

INTERNET

McGevna LF. Adiposis Dolorosa. Medscape Updated: Dec 15, 2017. Available at: http://www.emedicine.com/derm/topic839.htm Accessed Jan 6, 2020.

Vatanchi M. Cutaneous Lipomas. Medscape. Updated: Aug 23, 2018 Available at: http://www.emedicine.com/derm/topic242.htm Accessed Jan 6, 2020.

McKusick VA. ed. Online Mendelian Inheritance in Man (OMIM). Baltimore. MD: The Johns Hopkins University; Entry No:103200; Last Update: 08/05/2016. Available at: https://www.omim.org/entry/103200 Accessed Jan 6, 2020.

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Years Published

1987, 1989, 1998, 2003, 2008, 2012, 2020

The information in NORD’s Rare Disease Database is for educational purposes only and is not intended to replace the advice of a physician or other qualified medical professional.

The content of the website and databases of the National Organization for Rare Disorders (NORD) is copyrighted and may not be reproduced, copied, downloaded or disseminated, in any way, for any commercial or public purpose, without prior written authorization and approval from NORD. Individuals may print one hard copy of an individual disease for personal use, provided that content is unmodified and includes NORD’s copyright.

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FAQs

What does Dercums disease feel like? ›

The associated symptoms in Dercum's disease include fatty deposits, easy bruisability, sleep disturbances, impaired memory, depression, difficulty concentrating, anxiety, rapid heartbeat, shortness of breath, diabetes, bloating, constipation, fatigue, weakness and joint aches.

Does Dercums disease go away? ›

There is no "cure" for Dercum disease. At the present time, treatment for this condition is symptomatic, meaning that it focuses on one symptom at a time rather than the whole condition. Depending on the person, options can include weight reduction, surgery for the most painful lipomas, and medications to control pain.

How many people have Dercums disease? ›

People with Dercum's disease (DD) have painful lipomas in the fat on their bodies. DD is thought to be rare. A rare disease as defined by the Orphan Drug Act of 1983 means that less than 200,000 people have the disease.

Does Dercums disease cause dementia? ›

Psychiatric manifestations associated with Dercum's disease are not found in all the patients. They include depression and emotional instability, sleep disturbances, and less frequently cognitive impairment, dementia and epilepsy.

What helps Dercums disease? ›

Although there's no cure yet for Dercum's, your doctor may suggest treatments to ease your symptoms.
  • Surgery: In severe cases, your doctor may decide to remove your fatty growths. ...
  • Medicine: Some drugs will ease specific symptoms. ...
  • Liposuction: Your pain may be reduced by this procedure that suctions out extra fat.
10 May 2021

Why do I have so many lipomas all over my body? ›

We don't know what causes them, but some people develop them because of an inherited faulty gene. This condition is known as familial multiple lipomatosis and is not common. People with familial multiple lipomatosis will develop more than one lipoma. The exact number they have can vary but it can be many.

What autoimmune disease causes lumps under the skin? ›

Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is a condition that causes small, painful lumps to form under the skin. The lumps usually develop in areas where your skin rubs together, such as the armpits, groin, buttocks and breasts.

Is Dercum's disease life threatening? ›

According to a review in the Orphanet Journal of Rare Diseases , Dercum's disease is anywhere from 5 to 30 times more common in women. This wide range is an indication that Dercum's disease isn't well understood. Despite this lack of knowledge, there's no evidence that Dercum's disease affects life expectancy.

Can lipomas go away with weight loss? ›

The lipoma cells are believed to arise from primordial mesenchymal fatty tissue cells; thus, they are not of adult fat cell origin. They tend to increase in size with body weight gain, but interestingly, weight loss usually does not decrease their sizes.

What causes lumps in body? ›

What causes lumps on the skin? Lumps can be on or underneath the skin. They may range from skin tags, lipoma (fatty deposits under the skin), cysts, warts, inflammatory acne, lymphoma (cancer of the lymph system), or skin cancer, including basal cell carcinoma, squamous cell carcinoma, or melanoma.

Are lipomas caused by high cholesterol? ›

Share on Pinterest High cholesterol and obesity are risk factors for developing a lipoma. It is fairly common for a person to develop a lipoma. Experts estimate that around 1 percent of people have a lipoma. People who have a family relative with one or more lipomas have a higher risk of developing this condition.

What foods reduce lipomas? ›

Such fruits are blueberries, raspberries, citrus fruits, green leafy vegetables, squash, apples, plums, bell peppers, etc. Eat fish as it has good amounts of healthy omega-3 fats and good quality protein. Omega-3 fats decrease inflammation and limit the growth of lipomas.

Can a lipoma turn cancerous? ›

A lipoma isn't cancer and usually is harmless. Treatment generally isn't necessary, but if the lipoma bothers you, is painful or is growing, you may want to have it removed.

What is inside a lipoma? ›

All lipomas are made of fat. Some lipomas also contain blood vessels or other tissues. There are several types of lipomas, including: Angiolipoma: This type contains fat and blood vessels.

What autoimmune diseases cause lipomas? ›

Dercum's disease is a rare disorder that causes painful growths of fatty tissue called lipomas. It's also referred to as adiposis dolorosa.

What autoimmune disease causes lumps under the skin? ›

Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is a condition that causes small, painful lumps to form under the skin. The lumps usually develop in areas where your skin rubs together, such as the armpits, groin, buttocks and breasts.

Do lipomas hurt when pressed? ›

Lipomas are typically less than 2 inches (5 centimeters) in diameter, but they can grow. Sometimes painful. Lipomas can be painful if they grow and press on nearby nerves or if they contain many blood vessels.

Do lipomas make you tired? ›

Disease at a Glance

The lipomas may occur anywhere on the body and can cause severe pain. Other symptoms may include weakness, fatigue, and memory disturbances. It usually occurs in adults, and women are more commonly affected than men.

How do you get diagnosed with Dercum's disease? ›

A diagnosis of Dercum's disease is suspected based on a detailed patient history, a thorough clinical evaluation and identification of characteristic multiple lipomas. The distribution of the lipomas is important in distinguishing Dercum's disease from the other disorders involving lipomas.

What disease causes multiple lipomas? ›

Summary. Multiple symmetric lipomatosis is a rare condition characterized by the symmetric growth of fatty tumors (lipomas) around the neck, shoulders, upper arms and/or upper trunk. Non-alcoholics and women can also be affected. The signs and symptoms vary greatly from person to person.

Are lipomas caused by high cholesterol? ›

Share on Pinterest High cholesterol and obesity are risk factors for developing a lipoma. It is fairly common for a person to develop a lipoma. Experts estimate that around 1 percent of people have a lipoma. People who have a family relative with one or more lipomas have a higher risk of developing this condition.

What autoimmune disease attacks the muscles? ›

Myositis (my-o-SY-tis) is a rare type of autoimmune disease that inflames and weakens muscle fibers. Autoimmune diseases occur when the body's own immune system attacks itself. In the case of myositis, the immune system attacks healthy muscle tissue, which results in inflammation, swelling, pain, and eventual weakness.

What autoimmune disease causes severe itching? ›

What autoimmune disease causes an itchy rash? Some autoimmune diseases that may cause an itchy rash are cutaneous lupus, oral lichen planus, and erythrodermic psoriasis.

Can autoimmune disease go away? ›

Autoimmune disorders in general cannot be cured, but the condition can be controlled in many cases. Historically, treatments include: anti-inflammatory drugs – to reduce inflammation and pain.

What happens if a lipoma is not removed? ›

Unfortunately, they can still affect nearby tissues, nerves, and blood vessels. A lipoma may cause discomfort or pain if it has blood vessels running through it or if it presses on a nearby nerve; it may also interfere with muscle growth if it's unusually deep.

What is inside a lipoma? ›

All lipomas are made of fat. Some lipomas also contain blood vessels or other tissues. There are several types of lipomas, including: Angiolipoma: This type contains fat and blood vessels.

How do you dissolve lipoma naturally? ›

Mix Dried Sage

You can also mix half a spoon of dried sage with 2-3 spoons of neem and flaxseed oil. A balm-type mixture will be formed and you can coat the fatty lump with the balm as sage is a medicine known to dissolve fatty tissues. This mix may work as a lipoma natural treatment.

What happens if a lipoma burst? ›

Lipomas are benign fatty tumors. They do not burst. Sounds like what you had was either a sebaceous cyst that ruptured or an abscess that drained itself.

Can lipoma affect breathing? ›

Clinical manifestation of an endobronchial lipoma can occur as shortness of breath, cough, recurrent pneumonia, atelectasis, and hemoptysis.

Can exercise reduce lipomas? ›

Causes and Risk Factors of Lipoma

Lack of Exercise As with many things, being physically active may protect you. Some doctors believe that lipomas occur more often in inactive people.

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