Vampire Theory Haunts Porphyria Victims

Julia McMillan was selecting vegetables at the natural foods store in this wooded tourist town on Highway 1, south of Hearst Castle, when shop owner Bruce Magnusen asked, “Have you seen this morning’s paper?”

McMillan, 60, said she had not.

“There’s something in it about porphyria (an incurable genetic disease that afflicts both McMillan and her 28-year-old son, Michael), and it’s just horrible,” Magnusen said.

McMillan asked to see the paper, but the grocer was reluctant, saying that he didn’t want to upset her. When she insisted, he turned to Page 6 and a photograph of Bela Lugosi in his film role as Dracula, hovering open-mouthed over the neck of a blond woman in a swoon.

Rare Hereditary Disease

The accompanying article said that a University of British Columbia chemistry professor, David Dolphin, had proposed at a meeting of the American Assn. for the Advancement of Science, held in Los Angeles last May, that creatures known as vampires and werewolves were actually victims of a rare hereditary disease--porphyria--that drove them to drink blood to alleviate their symptoms.

Porphyria sufferers must avoid direct sunlight and so they--like werewolves and vampires--come out only at night, the article said. A few afflicted with a rare form of the disease (no more than 100 cases of this type have ever been reported), the article continued, can develop scarring and mutilation of the face, red teeth that appear to jut out from shrunken gums and abundant body hair.

Shop owner Magnusen told his customer that one local resident had already asked if the McMillans were the kind of people who consumed blood. Many people in the community knew of the pair’s illness, and Julia McMillan feared it wouldn’t be long before others would be asking similar questions.

“It’s a small town here (about 3,500), and news travels,” Magnusen later told a reporter.

While Julia McMillan was still at the market where she shops almost daily, a friend of Michael McMillan’s called him at the home he shares with his mother. The caller said he had heard on the morning news that porphyria is linked to vampirism and he wanted to know if it was true.

Unnerved and Panicked

A lean, good-looking man who has been forced to live almost like a retiree because of his illness, Michael was unnerved by the call. He believed researchers might actually have discovered something new about the sickness that has plagued him with severe abdominal pain and bouts of partial paralysis since he was 10.

Michael panicked, wondering if it was to be his fate to acquire the red teeth, hairy body and blood cravings that the newspaper article described. (The McMillans do not have the rare form of the disease that causes cosmetic mutations.)

“I was horrified,” he said later. “It’s bad enough to live with porphyria as it is, but I thought, if this were true, then what’s the use?”

The American Porphyria Foundation in Montgomery, Ala., reported that Michael’s reaction was not so different from that of other porphyria sufferers across the country who had heard of Dolphin’s theory on local news reports.

(Because the disease is difficult to diagnose, estimates of the number of victims nationwide range anywhere from 5,000 to 100,000.) Desiree Dodson, executive director of the foundation, said, “It (the article) really wrought many, many problems that we are still trying to combat.”

Michael McMillan’s doctor, Dr. Jerome Marmorstein, is critical of Dolphin’s theory of a connection between porphyria and the behavior of legendary vampires and werewolves. He objects primarily to the implication that vampires and werewolves were in fact real creatures.

Dolphin said in a telephone interview that he did not know if such beasts existed, but that he had found stories of blood-sucking human monsters in almost every culture: “There clearly seems to be some reason why they (vampires and werewolves) were so widespread in folk tales.”

Marmorstein also objected on the grounds that although certain forms of porphyria have been treated with intravenous blood, there is no evidence that victims have ever sought the blood of living humans, or that ingesting blood would help ease their symptoms.

“I was personally very offended by the whole matter (Dolphin’s report and media treatment of the topic),” Marmorstein said. “I wonder if David Dolphin were a physician if he wouldn’t have thought of the emotional damage he could inflict on porphyria patients.”

Dolphin said he believes his work was misrepresented in newspaper and television reports. “It’s very important to put it in historical context,” he said. “I was saying, ‘Hey, look, maybe this is what happened in the Middle Ages.’ Not, ‘Guess what your neighbor is doing tonight?’ ” He said he was expanding on the research of another scientist who first made the connection between the behavior of werewolves and victims of porphyria about 20 years ago.

No More Twilight Walks

Soon after the article appeared, Michael discontinued his twilight walks. Because he rarely leaves the house, the evening strolls down his street and along the seashore had been a highlight of his day.

“I just began to feel funny about it (walking at dusk),” he said. “If people believe I’m a werewolf or a vampire, I don’t want to be out walking at the same time a child disappears.” Michael said he feared that he would become a prime suspect in any unsolved violent crime in the community.

Why his neighbors--as well as Michael himself--would even entertain the idea that the sick man was a kind of latent vampire is a question that initially puzzled Michael’s physician.

A Santa Barbara internist, Marmorstein pointed out that the report was legitimized by its source: a prominent researcher speaking at a meeting of a respected organization.

The obscurity of the disease in question may also have contributed to the misunderstanding. “Let’s suppose the report had said people with diabetes or coronary heart disease are descended from vampires. People would know immediately it was malarkey,” Marmorstein pointed out. “But who knows about porphyria? Very few people have encountered the term or someone with the disease.” (The porphyrias are actually a group of related diseases, each characterized by an enzyme abnormality.)

Marmorstein said that when he first met Michael McMillan, he was struck by “his realism in that he could accept an incurable genetic disease without blaming others. I thought he had made a good adjustment and I admired him for it.

“And now he’s been petrified by this fantastic allegation,” Marmorstein said. “It just kicked out all the adjustments he had made.”

Julia McMillan arrived home with two bags of groceries on a recent day. She left her shoes at the door and crossed the immaculate white carpet to the kitchen. The ocean breezes and the afternoon light on the high-beamed ceilings gave the McMillan’s rented cottage an airy, optimistic atmosphere.

The McMillans came to Cambria after a series of moves in search of conditions which would not aggravate their porphyria. Because environmental chemicals and automobile fumes can trigger an acute episode of the disease, they’re forced to live where there is little pollution.

“This place is good for us, we finally found it,” Julia McMillan said as she began preparing a dinner of shrimp gumbo. Because porphyriacs also can be sensitive to some food additives, Julia said she must shop daily, cooking only with pure foods.

So many elements of everyday living can effect the McMillans’ health that they feel they must inform landlords, friends and neighbors of their special concerns. An improperly maintained automobile, for instance, with exhaust leaking into the passenger compartment, conceivably could threaten their lives. (Michael said he had one full-scale porphyria attack that landed him in an intensive care unit after he was exposed to automobile fumes while traveling in Germany.)

The illness has left both mother and son unable to work regular hours; both collect disability income. Michael has a real estate license and manages to sell several properties a year, he said. Although he feels relatively healthy on some days, the symptoms can strike suddenly and leave him bedridden for weeks at a time.

Historical References

Severe and uncontrollable pain is perhaps the most devastating symptom of the disease. Julia McMillan has discovered references to the illness in historical texts about European royal families, some of whose members had porphyria. In “A Child’s History of England,” Charles Dickens wrote of a suspected porphyriac, King Alfred, suffering from “a terrible, unknown disease which caused him violent and frequent pain which nothing could relieve.”

McMillan is divorced from her husband, a neurosurgeon. She has two grown children besides Michael, and three grandchildren, none of whom have porphyria. “The rest of the family is high-powered, successful, work-oriented. Mike and I are achievers, too,” said McMillan, who as a young woman was an actress on Broadway. “They (other family members) don’t understand that our health has stopped us cold.”

The peculiarities of living with the illness have brought Michael and his mother close, while making it difficult for them to form normal friendships. Michael has managed to make some friends during his three years in Cambria, but he said he felt his three best friends began to avoid him after the alleged porphyria-vampire link was publicized.

“No one can live with people looking at you sideways and making jokes about the full moon,” he said.

Julia added: “Things are coming down that are different, like AIDS. People are skittish and I can’t say I blame them (for shying away from Michael and her).”

Marmorstein wrote a letter to the editor of Science, the journal of the American Assn. for the Advancement of Science, requesting a printed apology for any harm caused by Dolphin’s report. (Marmorstein’s letter was rejected for publication by an editor who wrote back that the magazine did not have space for discussion of controversial statements made at the annual meeting.)

Michael McMillan said that he also would like to see a public apology for, or correction of, Dolphin’s report. Meanwhile, the McMillans are taking their own measures. They’re looking around for another town to live in.

“The next time we move we won’t tell anybody we have porphyria,” Julia McMillan said. “That means we’ll have fewer friends, and that’s too bad because we need our friends.”