Cape grad wants to educate public on painful condition

Standing up sends pain through Trevor Wiberg’s back, and lifting a box is enough to throw his arm out of joint.

Yet, many who meet him, including medical professionals, take one look at him and assume he’s a drug addict.

His medical condition is so painful he relies on narcotics to get through the day. But, he says, it is difficult to get the treatment he needs. Wiberg said people and doctors need to be better educated about painful conditions, so they can be better diagnosed and treated.

Wiberg, a 23-year-old Cape Henlopen High School graduate, suffers a very rare genetic disorder that leaves him susceptible to injury and in great pain. “It’s mutation of the gene that synthesizes collagen, which is the glue that holds you together,” said Wiberg. He said, because his connective tissues are so weak, moving around naturally is enough to dislocate a joint.

Wiberg said he was often injured as a child, but he and his family never considered it anything serious. His mother, Elizabeth, said she and doctors often chalked Trevor’s discomfort up to growing pains. Now that he knows he has Ehlers-Danlos syndrome, which often appears in people in their early 20s, he says it all makes sense.

The pain was serious enough to drive Wiberg away from sports, which he stopped playing as a sophomore. He said his back pain increased, and while he backed off the athletics, he continued to work in restaurants and at jobs that required physical labor, wanting to push through the pain and maintain his independence. “I have just dealt with pain most of my life,” he said.

As the pain increased, he called out of work more often. He started to drink to kill the pain over-the-counter drugs didn’t dull. The pain medication slowed him down when the pain didn’t stop him, he said.

Physician after physician couldn’t figure out what was causing the pain. Finally, a rheumatologist diagnosed Ehlers-Danlos syndrome and Wiberg began researching the condition. He traveled to Baltimore, Md., to have his diagnosis confirmed. Then, he sought treatment, and found that it is limited.

“It’s always been a struggle to find any kind of pain management. Insurance doesn’t cover acupuncture, chiropractic or trigger-point therapy,” he said. He uses a machine that sends electric pulses into his back muscles and does core-strength exercises to help his muscles support his body.

And, of course, there are the prescribed narcotics. Some people with Ehlers-Danlos syndrome have serious physical abnormalities. Trevor does not. He’s tall, over 6 feet, and has a fit build. “It’s been a strike against me getting help. I face a lot of negative judgments, especially when it comes to the issue of narcotic drugs. I’m facing the stigma of being a junkie; I’m automatically typecast as that, because a lot of people my age are,” he said.

It can be hard to convince people that his pain requires the drugs his doctor tells him to take, because he functions fairly normally, he said. Elizabeth said he’s gone to the emergency room for treatment and been accused by hospital staff of being a drug addict, his pain dismissed. Now, when he goes for treatment, Trevor and Elizabeth take pamphlets on Ehlers-Danlos syndrome and hand them to medical professionals, hoping to educate them about his condition.

He said he hopes education will break stigmas, especially those held within the medical community, against people who need pain medication. “I understand there is an epidemic of people who abuse these drugs, but it’s the people who need them that suffer. They treat you like you’re guilty before being proven innocent of being a drug seeker,” he said. That makes it hard for people who live with severe pain to be treated seriously.

He said using narcotic drugs has caused him other setbacks, limiting the kind of work he can seek because of their side effects, including severe nausea.

The pain, and fighting a disease for which there is no cure, takes an emotional toll, too, said Wiberg. He said he’s always been an independent, active person and Ehlers-Danlos syndrome has made him adjust his goals and redefine his outlook on life.

“I was probably the happiest person I knew, and now I’m the most unhappy person I know,” he said.

Endless pain has made it nearly impossible for him to concentrate on writing, political activism or music.

He said he’s had to shelve his goal of touring in promotion of his own music, which he has recorded at home.

“I’ve always been an independent person – it’s really hard to be a burden on people around me,” he said. But, he says, he wouldn’t be forging ahead without the help of his family, especially his mom, who campaigns on his behalf with doctors and insurance companies.

“I won’t take no for an answer. Either you tell me what I need to know, or send me to someone who can tell me,” she said.

Elizabeth said she hopes sharing Trevor’s story will educate and enlighten people about unusual and painful medical conditions. Both Trevor and Elizabeth said laws targeting drug abuse have the unintended consequence of limiting access to needed drugs for people who have severe pain. When the pain is caused by a condition that is not visible or apparent, it becomes even more difficult to obtain needed drug therapy, they said.

“So many people suffer through painful conditions without the support and help I have,” said Trevor.

What is Ehlers-Danlos syndrome?

• Ehlers-Danlos syndrome is the name for a group of rare genetic disorders, mostly of the skin and joints, but sometimes other organs.

• Because it affects the gene that makes collagen, it leaves people with weak, unstable or overly flexible connective tissues.

• The syndrome affects fewer than 1 in 20,000 people.

• Beyond excess flexibility, the syndrome can cause fragile and soft skin, severe, chronic musculoskeletal pain, frequent joint dislocations, and physical deformity.

• For more information, visit the Ehlers-Danlos National Foundation at www.ednf.org. Contact Trevor Wiberg at [email protected]

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