Ehlers-Danlos Syndrome (EDS) is a group of disorders that affect the body’s mass tissues that hold up and supports our skin, organs, blood vessels, and more. A defect within the body that breaks down these connective tissues causes problems that stem from mild to life-threatening. Patients experience loose joints and pain. The skin becomes very loose creating wrinkles and extra skin folds. In other words, people with EDS outwardly have stretchy, soft, thin, and fragile skin. Inward complications can include blood vessels and certain organs that without explanation will tear and bleed. Other complications include curvature of the spine and joints, as well as serious eye problems. Jareth Nebula from Edmond Washington is a successful male model who was born female. He also works part-time as a barbershop receptionist in Edmond. Jareth identifies as an FTM (a unique new gender agency) androgynous “agender” (without a gender) model.
Jareth proudly identifies himself as an “alien.” Jareth is not his birth name and he would prefer to keep it anonymous since he has legally changed it to Jareth Nebula. Jareth in trying to find his identity took his alien inspiration from the David Bowie character “Labyrinth.” He was diagnosed with the Ehlers-Danlos disease at age 26. Jareth is now in his early 30s. He experiences chronic pain that sends him to a chiropractor and a physical therapist. He stated that he always related to outer space and aliens so the idea of being known as an agender alien is an identity that he feels fits him perfectly. His family can not identify with the non-human Jareth, instead, they identify with him as a trans man. When he first came out to family and friends as transgender he thought he had found his gender pathway in life.
However, this transition turned out to be a misguided event for him. After a while, Jareth did not feel like a trans male. As a matter of fact, Jareth said that felt neither male nor female. Jareth tried to find an identity by undergoing gender surgery where he removed his nipples and shaved off his eyebrows. He also has 78 tattooed stars all across his body. He said that he simply felt like he was a non-human. But Jareth is continuing to forge ahead in life, despite that he would almost prefer to be called a thing rather than he or she. The online social media community has more supporters than detractors for Jareth’s alien persona. His family, even though they don’t fully understand Jareth, wholly supports him in all his life endeavors. Jareth says that he only asks people to accept him as he is now. He is going through life as a mentally happy alternative model who wears Japanese pop culture fashion, gothic makeup, and neon accessories that reflect his alien persona.
