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LITTLE ROCK, Ark. (KTHV) – An Arkansas woman is raising awareness about a rare blood disease known as Porphyria.
The symptoms of Porphyria range from vomiting and nausea to all-over body pain.
“I was about 12 or 13 when I think I first started showing symptoms,” said now 29-year-old Megan Parrish.
For years, Megan Parrish lived with an indescribable amount of pain.
“It’s almost like somebody lit a fire on my insides and I feel like I’m literally burning from the inside out,” described Parrish.
Bouts of nausea, vomiting and all over body pain kept her in bed most days.
“I didn't feel like I was getting to lead a normal teenage life, and it was tough,” said Parrish.
At the age of 18, after years of tests and misdiagnoses, Parrish was diagnosed with a rare blood disease called Acute Intermittent Porphyria.
“Basically, people with Porphyria have difficulties forming hemoglobin and therefore difficulty with the oxygen carrying capacity of their red blood cells,” said Dr. Peter Emanuel, Professor of Medicine and Director of the Rockefeller Cancer Institute at UAMS.
Dr. Peter Emanuel is Parrish's doctor and follows only a handful of patients with her condition.
“Porphyria is typical that you have good cycles and bad cycles. During her good phases, I see her only about every 6 weeks and during her bad phases it is much more frequent than that.”
Dr. Emanuel said Porphyria is typically misdiagnosed and currently there is no cure.
“Porphyria can have neurological and psychiatric conditions associated with it and that can often make it difficult and misdiagnosed with other things,” said Dr. Emanuel. “The main treatment currently is using a medicine called hematin, which is an IV infusion. We combine that with IV fluids.”
According to Dr. Emanuel, it is theorized that Vincent Van Goh, as well as some members of British Royalty, had Porphyria, based on research of their symptoms.
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