"Tree man" syndrome may be one of the world's worst genetic skin diseases - and its effects look like something straight out of a horror movie. It involves skin growths that look almost like tree bark, and this is, unfortunately, one of those skin diseases that are incurable. It can completely ruin the lives of those who happen to have it, and it can eventually become fatal. To all appearances, the growths caused by the disease actually look like the person who has it is slowly transforming into a tree.
For those wondering what causes epidermodysplasia verruciformis (EV), or Lewandowsky-Lutz dysplasia - the clinical name for tree man syndrome - you are in the same boat as the rest of the medical community. The exact causes of this "tree bark skin" is unknown. We know it has to do with a very rare genetic disorder, and it may have to do with immune system problems and other infections. More research is still being done as scientists and doctors desperately search for a cure.
These "tree man" syndrome facts may be distressing for some, so be aware that a few of the pictures and descriptions here are graphic.
Unfortunately, this disease doesn't tend to just happen to adults; it tends to show up at a very young age. Just over 7% of cases show up during infancy, and 22% percent of cases show up during puberty. However, a whopping 61% percent of cases happen during childhood.
For most of these kids, it starts as a minor concern, and parents assume it's a childhood rash. But then it starts to get worse. Kids can have the lesions show up on their hands, extremities, face, and even neck. These kids may have to start going through surgeries before they've even gotten into double digits in age. However, most of the bigger symptoms don't start manifesting until ages 20 to 40.
One of the most famous men to have this disease is Dede Koswara. In the early 2000s, his story came to light on the internet and left the world in shock. His wife of 10 years had left him, unable to deal with his illness. His siblings had to take care of him since he could not continue his work as a carpenter. He had to join freak shows in order to get by, and he, at last, managed to go in to get the growths removed in 2008. While 13 pounds of the stuff was taken off of his body, it soon grew back faster than ever, and he had to have multiple surgeries per year in order to survive.
In 2016, the disease finally got the better of him. Koswara was checked into the hospital, too weak to even speak or walk. He passed away with his family at his side.
While we may not know all the details of how this disease happens, we do know it has many components. People have a genetic predisposition with the genes EVER2 and EVER1. A mutation in these genes leads to a lowering of the skin's immunity to disease, which is why warts and lesions arise so easily. This lower immune system also allows HPV to penetrate the deep layers of the skin.
Other risk factors may include diseases like HIV or Idiopathic lymphopenia. There may also be carcinogenic factors from the environment as well. Unfortunately, we still do not understand how all these factors work together or what the functions of the culprit genes are, as some victims don't show signs of genetic mutations. But scientists and researchers do know that it is, thankfully, incredibly rare.
Although some people can find ways to live with the disease (some cases are not as bad as others), the condition can become dire. The growths can weigh anywhere from 10 to 20 pounds and while they are not painful, they can make eating, drinking, or doing other necessary tasks impossible.
Hygiene also becomes difficult. The inability to fully clean their skin can lead to infections that are nearly impossible to treat since doctors can't get past the growths to the site of infection. The lesions may also become carcinomas, which means they are cancerous and can be lethal.
One of the more famous cases resulted in the eventual passing of Dede Koswara in 2016. By the end of his life, he was so weak from the growths taking over his body that he could not feed himself or even speak. He may have had one of the most severe cases ever recorded. If the condition is detected early, treatments may be applied, which allow for a more normal life.