Woman Is 'Burned Alive' By Rare Skin Disease

An Arizona woman hoped to assure others who suffer from a rare disease, which makes the skin feel as if it's literally on fire, know they aren’t alone. She has been living with the excruciating skin disease for almost two years.

Kayla Hanson, 29, of Peoria, suffers from a skin disease categorized by experts as complex regional pain syndrome and a "genetic predisposition for chronic pain," which afflicted her whole body with painful bruises and burns.

Experts aren’t exactly sure what causes complex regional pain syndrome (CRPS), which caused nerve dysfunction or abnormal inflammation. It is an uncommon form of chronic pain that affects the arms or legs and can develop after surgery, injury, stroke or heart attack, according to the Mayo Clinic. Treatment is most efficient when started early and can lead to improvement and even remission.

"It feels like somebody has dipped you in gasoline, lit you on fire and put you in a trash compactor," Hansen told CBS-affiliate KTVK Thursday.

Hanson managed a restaurant two years ago before the skin disease invaded her life. One day, a door closed on her hand and the swelling wouldn't subside. Experts say the disease is usually triggered by a combination of injury and a genetic predisposition to chronic pain.

"The swelling didn't go down, it was red and bruised, and I started getting electric shock pain," Hansen told KTVK.

"They go all the way up my arms on both sides and I also have them on my scalp," Hansen added, regarding the bruises and sores that cover her body.

Some patients reportedly found relief from a combination of a strong sedative called ketamine. Some claimed spinal cord stimulators also helped ease the pain. Hanson said that in some cases, pain-stricken patients resort to suicide.

"It's known as the suicide disease. They take their own life because they feel so alone and they're in so much pain," Hansen told KTVK.

She recently visited Arkansas to meet with Dr. Katina van der Merwe, an expert on CRPS. Dr. van der Merwe recently published a book about the disease called "Putting Out The Fire." She said that those afflicted with CRPS experienced a range of symptoms including weight loss, sleep deprivation, and constant migraines.

"These people feel at least one of more body parts are on fire, literally burning alive," van der Merwe told KTVK. "They'll lose weight, can't sleep at night, headaches often. She (Hansen) will literally feel the heat come up and it will blister and develop sores."

Dr. van der Merwe emphasized the importance of early diagnosis of the disease. She noted that time was important and that a patient could go into remission a year after diagnosis.

"It is much more possible to go into remission within one year of developing this condition," Dr. van der Merwe said. "You could have a child who has a fracture and if you didn't know about this condition, you’re going to waste so much valuable time going from doctor to doctor," she said.

Hanson said she will travel back to Arkansas for more treatment when her arms recovered. She is also going to visit a physical trainer who also has the disease and in is in remission.

"If I have to go to different states different countries, I'm going to keep going," Hansen said. "I want my life back."