For people who don’t live with chronic painful conditions, such as hepatic porphyria, it’s hard to imagine the type of intense pain Colin McEwen was in — both physically and emotionally. No one believed him. Even his loving wife and friends. According to a story in the Norman Transcript, McEwen was popping so many painkillers that those closest to him assumed that he was an addict.
The rare disease McEwen suffered from eluded everyone. Only after he became paralyzed did his doctors begin to realize that something very serious was in play. And yet, even a skilled neurologist failed to diagnosis his condition. Little wonder… McEwen had a very rare disease called hepatic porphyria, a super-rare, inherited metabolic disorder that affects approximately 5,000 people in the U.S. and Europe.
There are at least eight types of hepatic porphyria. McEwen had the type called acute intermittent porphyria, which causes abdominal pain, pain in the arms and leg, generalized weakness, vomiting, confusion, constipation, tachycardia, fluctuating blood pressure, urinary retention, psychosis, hallucinations, and seizures. In fact, he had every symptom, but his doctors failed to diagnosis him correctly.
After enduring this condition for years, McEwen wanted to go to the Mayo clinic for a second opinion. But he and his wife couldn’t afford the trip. Enter Go-Fund-Me, an online crowd-source funding site for raising money for all types of endeavors. Contributions rolled in and the Oklahoma couple flew to the highly acclaimed health center where they finally got some answers.
Because it is a blood disorder and not a neurological one, McEwen was diagnosed and treated by a hematologist. Although there is no cure. After seeing the specialist at Mayo, he was able to go on a treatment to help manage the relentless porphyria attacks.
Today McEwen is helping to spread awareness about hepatic porphyria and the need for meaningful treatments. He’s become an active advocate. Thanks to those who invested in his health, he hopes to help other people who are suffering from misdiagnosis and misunderstanding –as he once was.
