Dubbed as a ‘tree man’ due to the bark-like growths on his body, Bangladesh’s Abul Bajandar suffers from a rare genetic condition called Epidermodysplasia Verruciformis (EV). He has been living with the condition for more than two decades now and has undergone 25 operations since 2016 to remove the growths from his hands and feet. But the condition relapsed with some growths becoming several inches long. Bajandar, who is in his late 20s has said that he wants his hands amputated to relieve him of the unbearable pain.
Fewer than half a dozen people around the world are believed to have the syndrome. Here’s all you need to know about the tree man syndrome including the signs and symptoms, causes, and whether the condition is curable.
What is the Tree Man Syndrome
An extremely rare autosomal recessive hereditary skin disorder linked with a high risk of skin cancer, EV occurs when wart-like lesions cover parts of the body. Sometimes, the warts can progress into long, bark-like tumours, hence, the disease is also known as tree man syndrome. The inherited condition makes a person highly susceptible to infections caused by the human papillomavirus (HPV), the most common sexually transmitted infection.
A person must have two abnormal EV genes one from each parent to develop EV, which is a genetic condition. In most cases, the genetic mutation is sporadic which means that it developed when the sperm or egg first formed. These genes can still be passed on to future offspring.
About 10 per cent of people with EV have parents who were blood relatives, meaning they shared a common ancestor. People who have EV have a normal immune response to non-HPV infections. However, for reasons still not completely known, these inpiduals are more prone to infection with certain HPV subtypes.
Growths may be limited to a small cluster of just a few warts or extend to more than 100 warts covering much of the body.
Signs and symptoms
Males and females appear to be at equal risk. Although symptoms primarily appear by puberty, EV can develop at any age including infancy and middle-ages. In more than half of EV cases, symptoms first appear in children between the ages of 5 and 11.
Some of the symptoms may include a mix of flat-topped or bumpy lesions; small, raised bumps known as papules; large patches of raised and inflammed skin, known as plaques; small and raised brown lesions that resemble scabs.
Flat lesions are more common in areas exposed to sunlight including hands, feet, face and ears while plaques usually develop on the neck, arms, armpits, legs, soles of the feet and genitals.
Diagnosing a rare disease of any kind can be a challenge. But if warts or unusual lesions appear, you should see a dermatologist, even if the symptoms appear to be mild. The doctor should know your medical history and have an understanding of your symptoms: what they are, when they started, and if they ve responded to any treatment. Your doctor will also examine your skin.
If your doctor suspects EV or any other condition, small tissue samples for a biopsy may be taken. This will include tests for HPVs and other signs that might point to EV. Skin cells called keratinocytes can sometimes reveal HPVs associated with EV.
EV is considered to be a life-long malady. The main goal of the treatment is to optimise the quality of life and alleviate the symptoms through medication and surgical procedures as there is no definitive cure for the condition. Therefore, patients are advised to remain under medical supervision from time to time.
These treatments include chemical treatments such as liquid nitrogen; topical ointments such as Verrugon that contain salicylic acid and cryotherapy in which the wart is destroyed by freezing it.
Another important aspect of treatment is limiting sun exposure and using sunscreen to help preserve the health of your skin. As people with EV are at an increased risk of developing skin cancer, following the dermatologist s advice about skin care and sun protection is very important.