Living Life as a Tree
A few years ago, the mysterious story of Dede Koswara and his unique condition dominated the news. Imagine living with large wart-like growth all over your body, completely covering your hands, feet, face, and torso and resembling tree bark. Koswara’s devastating condition is known as Epidermodysplasia verruciformis (EV), also known as “Tree Man Syndrome,” and unfortunately there is no cure.1
EV is a skin disease which begins in childhood and remains within the individual for their lifetime. It is characterized by widely spread, refractory skin lesions which resemble flat warts. Individuals with EV are highly susceptible to human papillomavirus (HPV), and if infected with HPV, will go on to develop these physical symptoms. EV is an autosomal recessive genetic hereditary skin disorder.2 Autosomal recessive disorders can only manifest if the individual has two alleles (copies) of the abnormal gene.3 If either of these genes is inactivated, the proteins created by these genes cannot be produced, resulting in the manifestation of Tree Man Syndrome. EVER1 and EVER2 are still undergoing research, and not much is known about their function. However, scientists hypothesize that they have roles regarding zinc distribution within the nuclei of cells. Disruption of the chemical and elemental balances with a cell can have catastrophic complications.4
34-year-old Dede Koswara from Indonesia became known as “The Tree Man” in 2007 when images of his condition went viral over the Internet. Millions of people around the world were fascinated by this man, and how his condition results in the growth of warts, giving a ‘tree-like’ appearance. Koswara was highly susceptible to HPV infection due to his genetic abnormality, and unfortunately became infected with the virus when he cut his leg at ten years old. Koswara’s condition was so severe that he was unable to eat by himself or use his hands in any way, and had constant pain while walking. Due to his time in the public eye, doctors elected to surgically remove the warts in an attempt to improve his quality of life and possibly keep the warts from recurring, broadcasting over USA’s TLC Channel in 2008.1 The three-step surgery included removing the thick carpet of warts and horns on his bands, as well as small warts located on his head, torso, and feet, followed by covering his hands with skin grafts. The surgery resulted in the removal of 96% of his warts, weighing over 6 kilograms. Unfortunately, within a few months, warts began to resurface. As a result, Koswara has since undergone two more advanced surgical procedures to remove the regrown warts. However, all have led to the regrowth of the lesions.5 Even with his surgeries, Koswara’s outlook on life is very poor due to his lack of movement and pain. Severe complications from his condition, such as his weakened immune system, eventually led to Dede Koswara’s death on January 30th, 2016. Although surgery is the best care possible for individuals with Tree Man Syndrome, the risk of complications is rather high. As the skin lesions and bark-like warts are so thick and heavy, it is often difficult for surgeons to accurately dissect away the growths. As a result, there is a high probability of hitting nerves, blood vessels, or accidentally removing extremities such as fingers and toes during the procedure. It is also for this reason why Koswara’s surgery led to the removal of 96% of his growths and not 100%. Despite recent years of research on this mysterious disease, no medication has been developed to treat EV. It is hoped that more individuals who have this condition step forward past the stigma, and help conduct more in-depth research, aiming to ultimately allow a greater value of life for those affected.
Although Dede Koswara’s case is extremely burdensome, there have been instances where individuals who have this condition have gone on to live relatively normal lives with effective surgery. Ion Toader, a Romanian man, was diagnosed with EV in March 2007, confirmed by both dermatologists in Romania and the United States. After undergoing surgery in late 2013, Toader has been fortunate enough have been almost fully cured and to have very minimal regrowths, therefore not requiring any future surgeries for the foreseeable future. Abul Bajandar from Bangladesh has become the third ‘Tree Man’ to be widely known for the condition. Bajandar was diagnosed in early 2016, and also underwent surgery in which more than 5 kilograms of warts were removed from his hands, legs, and feet.6 Both cases were strikingly similar to that of Dede Koswara’s, with the individuals presenting with ‘tree-like’ wart growths all over their bodies, reducing possible movement. The reason behind the success of Toader and Bajandar’s cases in comparison to Koswara’s is still unclear to scientists, and for this reason, Koswara can only be branded as having a more severe form of the disease.
Tree Man Syndrome has received a lot of airtime in the past few years. Many documentaries on channels such as The Discovery Channel and TLR following the lives of Dede Koswara and the like have been created with the hopes of showing the public the difficulties of living with this condition, and rare diseases in general.1 The condition has also been featured in popular culture, such as being a topic of interest on an episode of the TV show ‘Grey’s Anatomy’ as well as ‘Nip/Tuck.’ These references in media have increased the awareness of this mysterious disease and lives that these individuals live, unable to eat, sleep, walk or move properly. Not only do these individuals face physical problems, but deal with the incredibly heavy toll taken on their mental health and wellbeing. With this heightened awareness, potential research has increased with scientists becoming more interested in this area of rare diseases. Scientists are currently funding research to better understand the genetic cause of the condition, specifically looking into the EVER1 and EVER2 genes.4 Once this mechanism is understood, the possibility of medications will be on the horizon. Scientific research into rare diseases is extremely important, even though it seems unnecessary to many individuals. Many ask the question: if this condition only pertains to a handful of people around the world, why are we spending thousands of dollars trying to solve it? Apart from the hope that you will be able to increase the quality of life for these individuals, research into these areas helps the world better understand biological and chemical mechanisms and further advances research into the implications of genetic disorders. A cure for an individual helps understand the cure for many more.
1. Glionna J. Indonesian 'Tree Man' trapped in his mutating body. Los Angeles Times. http://articles.latimes.com/2010/jul/16/world/la-fg-indonesia-treeman-20100716. Published 2010.
2. Orth G, Jablonska S. Papillomaviruses. New York: Elsevier; 1997.
3. What are the different ways in which a genetic condition can be inherited? Genetics Home Reference. 2016. Available at: https://ghr.nlm.nih.gov/primer/inheritance/inheritancepatterns.
4. Ramoz N, Rueda L, Bouadjar B, Montoya L, Orth G, Favre M. Mutations in two adjacent novel genes are associated with epidermodysplasia verruciformis. Nature Genetics. 2002;32(4):579-581. doi:10.1038/ng1044.
5. Reuters. Indonesia's "tree man" comes home after treatment. Los Angeles Times. http://www.latimes.com/la-on-treeman28-2008aug28-story.html.
6. Atherton M. This man has growths from his hands that look like tree roots. International Business Times UK. 2016. Available at: http://www.ibtimes.co.uk/bangladesh-tree-man-5kg-tree-root-growths-hands-finally-have-surgery-1541237.
Cite This Article:
Misra A., Zheng K., Chan G., Ho J. Living Life as a Tree. Illustrated by C. Nguyen. Rare Disease Review. January 2017. DOI:10.13140/RG.2.2.13416.47361.