The Tree Man of Indonesia
Epidermodysplasia Verruciformis and Its Rare Skin Disorder
Epidermodysplasia verruciformis (EV), often called “Tree Man” syndrome, is a rare genetic disorder that causes the growth of wart-like lesions resembling tree bark. Dede Koswara, known as the “Tree Man” of Indonesia, became widely recognized after his struggle with this condition was shared publicly, bringing global attention to the disorder. These unusual growths result from an abnormal susceptibility to specific strains of human papillomavirus (HPV).
The challenges faced by individuals with EV extend beyond physical appearance, impacting everyday activities and social life. The story of the “Tree Man” sheds light on both the medical complexity of EV and the personal resilience required to navigate life with such a rare disease.
What Is Epidermodysplasia Verruciformis?
Epidermodysplasia verruciformis is a rare genetic condition that causes abnormal skin growths and makes people highly susceptible to specific strains of human papillomavirus (HPV). It results in a unique and recognizable skin disorder that can lead to lifelong complications.
Definition and Classification
Epidermodysplasia verruciformis (EV), sometimes called tree-man disease, is a rare inherited skin disorder. It causes the development of wart-like lesions and scaly patches mainly on the hands, feet, face, and neck. These lesions can resemble tree bark or wood, giving the condition its nickname.
EV is classified as a type of genodermatosis, which refers to skin diseases caused by genetic mutations. Unlike common warts or skin conditions, EV is persistent, difficult to treat, and often becomes more extensive over time.
The disorder is chronic and does not resolve spontaneously.
Genetic and Inherited Aspects
EV is an autosomal recessive genetic condition. This means a child must inherit two copies of the mutated gene—one from each parent—to develop the disease. The most commonly affected genes are EVER1 (TMC6) and EVER2 (TMC8), which play a role in regulating the body’s response to certain HPV types.
These mutations disrupt the skin's ability to control HPV infections, allowing the virus to cause widespread skin changes. Family history is a key risk factor, and cases have often been reported within specific families or closely related populations. Genetic counseling can help families understand inheritance patterns and recurrence risks.
Origins of the Term 'Tree Man'
The term “Tree Man” comes from the characteristic appearance of the skin lesions in some EV patients. These lesions can grow outward in thick, bark-like projections. Notable cases, such as Indonesian carpenter Dede Koswara, have drawn international attention due to the dramatic look of the growths.
The nickname “tree-man disease” highlights the severe form of the condition where skin lesions mimic the texture and color of tree bark. These growths can limit the use of hands and feet, cause pain, and lead to social isolation. Pictures of affected individuals have increased awareness but can also lead to misunderstanding or stigma.
Relationship to Human Papillomavirus
Individuals with EV are especially vulnerable to infection by specific cutaneous types of human papillomavirus (HPV). Over 90% of lesions associated with this skin condition have detectable HPV DNA. Unlike the forms of HPV that usually affect the general population, EV is primarily associated with HPV types 5, 8, and related strains.
HPV infects the skin’s outer layer, causing lesions that may develop into flat warts, red-brown plaques, or “bark-like” growths. The genetic defect in EV hampers the body’s usual immune defense against HPV, allowing the virus to replicate unchecked. Persistent HPV infection in EV patients increases their risk for developing squamous cell carcinoma, especially in sun-exposed areas.
Symptoms and Clinical Features
Epidermodysplasia verruciformis (EV), sometimes known as “Tree Man syndrome,” is an inherited skin disorder that leads to a distinctive set of clinical findings. Patients develop a variety of wart-like lesions and bark-like skin growths, frequently on the hands and feet, which can progress and recur over time.
Wart-Like Lesions and Skin Growths
The hallmark of EV is the presence of multiple, persistent wart-like lesions. These may start as flat, scaly patches or small papules that resemble common warts.
With time, these lesions can evolve into thicker, rougher skin growths that may appear bark-like in severe cases. The size and shape can vary, and massive warts are not uncommon in advanced presentations of the disease.
The lesions are often resistant to standard treatments for common warts. Many patients experience emotional distress due to the visible nature and texture of these lesions.
Distribution on Hands and Feet
Lesions and growths predominantly affect sun-exposed areas, with the hands and feet being the most common sites. The dorsal (back) surfaces of the hands, fingers, and feet are especially prone to develop thick, horn-like projections.
This distribution pattern often leads to functional impairment, as the bulk and location of the growths can restrict movement. In some cases, the lesions can cover large areas, making daily tasks difficult.
Toe and fingernail changes, such as thickening or deformity, can also be present if growths extend or compress nearby tissues.
Progression and Relapse
Epidermodysplasia verruciformis tends to follow a chronic course, with gradual worsening of symptoms over time. Lesions can multiply, enlarge, and become increasingly difficult to manage without ongoing intervention.
Relapses are common, even after attempts at surgical removal or dermal therapy. Growths often reappear in the same locations or in adjacent skin.
Some patients may experience periods where new lesions do not form, but recurrence is likely due to the persistent, underlying susceptibility caused by genetic factors.
Pigmented Plaques and Skin Eruptions
In addition to wart-like lesions, patients may develop pigmented plaques. These are often brownish or grayish areas of thickened skin that can resemble those seen in pityriasis versicolor.
Pigmented plaques tend to appear on the trunk, neck, or face, sometimes blending with or near wart-like lesions. Skin eruptions such as scaly patches or new spots may occur, especially after sun exposure.
It's important to note that these pigmented changes are not only cosmetic. They can be markers for potential malignant transformation, increasing the risk for skin cancers in affected individuals.
Notable Tree Man Cases
Epidermodysplasia verruciformis has produced several widely-reported cases around the world. These cases have highlighted the rare nature of the disease and the profound medical and social challenges faced by those affected.
Dede Koswara: The Indonesian Man
Dede Koswara, an Indonesian man, became internationally known for his severe case of epidermodysplasia verruciformis. His hands and feet developed large, wart-like growths that resembled tree bark, leading to the nickname "Tree Man."
The growths severely limited his ability to work, care for himself, and participate in daily life. Dede underwent multiple surgeries at Hasan Sadikin Hospital in Bandung, where doctors removed several kilograms of lesions over the course of his treatment.
Despite medical intervention, the condition recurred, and Dede continued to require ongoing care. His case brought significant global attention to the disorder and inspired further research into possible treatments.
Abul Bajandar: Bangladesh’s "Tree Man"
Abul Bajandar, a former bicycle rickshaw puller from Khulna, Bangladesh, is another notable case. He developed heavy, horn-like growths on his hands and feet due to the same rare genetic disorder.
Doctors at Dhaka Medical College Hospital performed at least 16 surgeries to remove the lesions, allowing him to regain use of his hands for the first time in years. Bajandar’s case was widely covered in Bangladeshi and international media.
Despite some improvement, Bajandar experienced recurrence of the lesions, highlighting the chronic nature of epidermodysplasia verruciformis.
Ion Toader and Other Documented Cases
Ion Toader, a man from Romania, has also been identified as a patient with epidermodysplasia verruciformis presenting with persistent, wart-like growths. His case demonstrates that the disorder is not restricted to a single region or ethnicity.
A few other cases have been described in medical literature, often underlining challenges in disease management. These cases sometimes involve resistant warts and repeated surgical interventions.
The diversity in presentation and progression in patients like Toader has provided valuable insights into the variability of this rare condition and the need for individualized treatment strategies.
Medical Evaluation and Diagnosis
Accurately diagnosing Epidermodysplasia Verruciformis (EV)—also known as “Tree Man Syndrome”—requires a systematic approach that includes clinical, genetic, and differential analyses. Early identification is essential for effective management of this inherited skin disorder, as it has unique characteristics distinct from other rare conditions.
Clinical Examination Process
A detailed clinical evaluation begins with a physical inspection of the skin. Physicians look for widespread, flat-topped or wart-like papules, plaques, and patches, often resembling tree bark or wood. Lesions tend to appear on the hands, feet, face, and trunk.
Dermatologists document the type, size, location, and distribution of skin growths. They also take note of the patient’s age of onset and family history. This is crucial for identifying EV as a potential inherited disorder.
Other symptoms studied include secondary bacterial or viral infections. The presence of these infections can further guide the diagnostic process.
Genetic Testing Techniques
Because EV is a rare inherited skin disorder, genetic testing is a key diagnostic tool. The most common mutations found are in the EVER1 (TMC6) and EVER2 (TMC8) genes. These mutations impair the body’s ability to defend against specific human papillomavirus (HPV) types responsible for the skin manifestations.
Blood samples are typically collected for DNA analysis. Techniques like PCR (Polymerase Chain Reaction) and direct gene sequencing are used to detect relevant gene mutations. A table summarizing common genetic markers is provided below:
Gene Mutation Type Associated Symptom TMC6 Loss-of-function Widespread flat warts TMC8 Loss-of-function Tree bark-like lesions
Confirming these mutations supports a definitive EV diagnosis and helps genetic counselors guide patients about family risk.
Differentiating From Other Skin Disorders
Distinguishing EV from other skin conditions is critical, as misdiagnosis can lead to ineffective treatments. Key disorders considered in the differential diagnosis include common viral warts, lichen planus, and psoriasis.
EV lesions often persist and spread progressively, unlike the more self-limiting nature of ordinary warts. A family history of similar symptoms can further differentiate EV from non-inherited skin disorders.
Biopsy and histopathology are sometimes performed when the clinical and genetic findings are unclear. Unique microscopic features, such as large keratinocytes containing viral particles, help confirm EV and rule out other rare conditions.
Treatment and Management Strategies
Epidermodysplasia verruciformis (EV), commonly called “Tree Man disease,” presents a persistent treatment challenge due to its recurring lesions and complex care requirements. Approaches include repeated surgeries, medical therapies, and ongoing follow-up to reduce recurrence and manage complications.
Surgical Interventions
Surgery remains the principal treatment for patients with extensive verrucous growths. In severe cases like the “Tree Man” of Indonesia, surgeons perform serial excisions to remove large, cornified lesions from the hands, feet, and sometimes face. Multiple operations may be necessary since lesions often regrow.
Surgical removal can help improve hand and limb function, reduce pain, and prevent infections secondary to open fissures. However, the procedure carries risks, including heavy bleeding and delayed healing due to the size and number of lesions. Hospital-based care, typically under anesthesia, is required for safe intervention.
A multidisciplinary surgical team, which may include a plastic surgeon, is often involved. Close post-operative monitoring in specialized hospitals, such as Dhaka Medical College Hospital, plays a crucial role in achieving optimal outcomes. Recurrence after surgery is common, necessitating periodic repeat operations.
Plastic Surgery Approaches
Plastic surgery techniques are frequently employed to optimize both functional and cosmetic results after excisions. When the growths are excised, patients can be left with soft tissue deficits or contractures, which plastic surgeons address using skin grafts or local flaps.
Reconstructive procedures aim to restore mobility, especially for hands and feet affected by extensive tissue involvement. Surgeons may use advanced microsurgical methods when necessary, particularly in cases where simple closure is not feasible due to large wounds.
Careful selection of graft sites and proper wound management are essential to minimize scarring and infection risk. The goal is not only to remove warts and plaques but also to allow the patient to regain as much normal activity as possible post-surgery, often requiring lengthy inpatient stays at tertiary care centers.
Medical Therapies and Ongoing Care
No single medication offers a cure for EV, but a variety of drugs are used to manage the disease and prevent lesion regrowth. Therapies include topical and oral retinoids, which help regulate abnormal skin cell growth. Antiviral treatments like cidofovir or interferon have been tried with variable success to target the underlying HPV infection.
Adjunct measures may include antibiotics to treat secondary bacterial infections and regular application of emollients and keratolytic agents to maintain skin integrity. Routine clinical follow-up is vital, with dermatologists monitoring for signs of malignant transformation, especially squamous cell carcinoma.
Management often extends beyond the hospital, requiring community-based wound care and psychosocial support due to the impact on quality of life. Patients treated at centers like Dhaka Medical College and Hospital receive multidisciplinary outpatient care, addressing both physical and emotional needs.
Relapse and Long-Term Management
Recurrence is a hallmark of epidermodysplasia verruciformis. Even after multiple surgeries and aggressive therapies, lesions tend to reappear over time. Periodic assessments are necessary to monitor for new lesion growth and detect early stages of skin cancer.
Ongoing management may include repeated minor or major surgeries, adjustments in topical or oral medications, and rehabilitation for function loss. Patient education about hygiene, self-monitoring, and skin cancer warning signs is crucial.
Hospitals such as Dhaka Medical College and Hospital commonly provide long-term follow-up programs. These programs help prevent complications, coordinate care from various specialties, and support patients in adapting to the chronic nature of the disorder.
Social, Psychological, and Economic Impacts
Epidermodysplasia verruciformis (EV), especially when presenting in severe forms like the "Tree Man" syndrome, affects multiple domains of a person's life. The condition can shape public attitudes, limit work opportunities, and draw both charitable and media attention.
Stigma and Public Perception
People with EV are often subjected to significant social stigma due to the unusual and striking appearance of their skin lesions. Community members may react with fear, misunderstanding, or avoidance, which can lead to isolation.
Many individuals are labeled as "freaks" or referred to as having a "circus act" appearance, particularly in cases that become widely known. This label can be damaging and restrict social interactions.
Stereotypes and misinformation contribute to a lack of acceptance. Sometimes, affected individuals avoid public spaces to minimize negative encounters and avoid being photographed or stared at by strangers.
Impact on Daily Life and Employment
Daily routines for those with severe EV are often disrupted by chronic pain, limited mobility, or difficulty performing basic tasks. Hand and finger lesions can make it almost impossible to hold objects or eat without assistance.
Employment opportunities are extremely limited. Physical symptoms restrict many types of manual labor, while visible lesions create barriers in service jobs due to public reaction. Some may experience outright refusal of job offers or lose existing employment after symptoms worsen.
A lack of income can increase reliance on family or community members, reducing personal independence. In some cases, people are left without any stable financial support, making daily survival more difficult.
Support from Charities and Donations
Charity groups and individual donors sometimes provide financial assistance, medical care, or basic supplies to affected people. International attention can result in large-scale fundraising campaigns aimed at covering surgery, medication, or travel costs for specialist treatments.
Not all individuals with EV receive consistent support, and some rely on sporadic donations. Lists of supporters, including notable personalities, may increase public interest and direct additional resources their way.
The support can be vital for accessing experienced dermatologists or hospitals, particularly in countries where public health systems are under-resourced. However, after initial aid, continued assistance is not guaranteed and many families still face ongoing hardship.
Media Attention and Celebrity Status
Cases like that of the “Tree Man” have attracted global media coverage, sometimes granting a kind of celebrity status to the individual involved. Articles, documentaries, and news features have brought awareness to the disease and the person’s daily struggles.
Public attention can have mixed effects. Increased visibility may generate donations or medical offers, but it also exposes individuals to sensationalism and loss of privacy. Some become unwilling public figures, discussed or displayed as unusual curiosities rather than patients.
The association with celebrity or a “circus act” persona can last for years, shaping how the person is remembered. While some positive changes can follow media involvement, many continue dealing with the same barriers long after the headlines fade.
