Another “miracle”?

From trunews.com comes the story of Jennifer Wood, a 30-year-old resident of Cleveland, TN, who claims to have been miraculously healed of an incurable disease called porphyria EPP. Rev. Jack Smith is pastor of the North Cleveland Church of God where the healing allegedly took place last September.

Wood said she is living proof for anyone who does not believe God does miracles today. For those who do not believe God still works miracles, Smith had encouragement to offer.“First of all, read the Bible. It’s full of miracles from front to back, and God is a God of miracles; in fact, everything that God does is a miracle. People say, ‘Well I wish God could do a miracle for me,’ well He’s done miracles for everybody. Just saving us from sin and eternal damnation is a miracle, probably the greatest miracle,” said Smith.

If Wood’s story checks out, she is clearly eligible for James Randi’s One Million Dollar Paranormal Challenge, which would let her drop a nice fat tithe into the offering plate at the North Cleveland COG if she can actually document her claims. There are some aspects of her story, however, which might suggest that she won’t be cashing that million-dollar prize check any time soon.

The first little red flag comes in the second paragraph of the article.

Thirty-year-old Jennifer Wood of Cleveland, Tenn. has been sick her entire life with a rare, incurable blood disease known as Porphyria type EPP. According to the Web site, www.wrongdiagnosis.com, one of the world’s leading providers of online medical health information, Porphyria is a disorder that causes the body to produce too much of the chemical Porphyrin and accumulates in toxic amounts in the body. Two of the main side effects are extreme sensitivity to sunlight and muscle pain.

Actually, there are two or three little red flags in this one paragraph. First of all, there are a number of Internet resources one can turn to for information about porphyria EPP, such as the Merck web site or the web site of the American Porphyria Foundation. The article doesn’t use these sources, however. Instead, it turns to wrongdiagnosis.com–a site whose very name appeals to people who think laymen with little or no medical training can diagnose themselves more reliably than experienced physicians.

Not that the site itself is disreputable or unreliable, of course. An informed patient can be something of a mixed blessing, due to his or her lack of comprehensive medical training, but overall it’s beneficial to have web sites that provide patients with in-depth information on health-related topics, including diseases that the average family doctor might not be too familiar with. At the same time, however, the wrongdiagnosis.com web site provides a rich shopping cart of diseases to choose from, should one be inclined to go looking for symptoms to complain about.

And, unfortunately, the site is not terribly-well organized. Browsing the web site, and searching for porphyria EPP, returns a vast slew of snippets of information, not all of which are strictly relevant. Muscle cramps and muscle weakness, for example, show up under “Porphyria Symptoms,” but if we review the information at the Merck site or in the handy guide (PDF file) produced by the American Porphyria Foundation, there’s no mention of porphyria EPP producing symptoms of muscle pain or weakness. Each different type of porphyria is a genetic malfunction related to a specific enzyme, and the symptoms are different depending on which enzyme is affected. Porphyrias in general may include symptoms of both photosensitivity and muscle pain, but EPP is not one of the porphyrias that produce muscle problems. And according to the American Porphyria Foundation, “it is

very unlikely that … someone with one type of porphyria will go on to develop another.”

Muscle problems, however, are a big part of Wood’s dramatic testimony.

That Sunday morning, Wood said she woke up before the alarm went off and spent time praying for God to give her strength. By the time she was ready for the service, her body was in so much pain she had to fight the urge to crawl back in bed.

“My brother showed up, and he picked me up and had to help me get to the car,” Wood said. “Once we got to church, he had to help me get in to sit down. I had to walk with a cane, and I was dressed in my typical garb; I had on long skirts, long sleeves, gloves, hat, veil and a hooded cape that kept the sun off of me.”

…[At the end of the church service] “I picked up my cane, and I hobbled down to the front, and I laid my cane down on the altar. I took my gloves off. I took my veil, I took off the hat, and I laid them all down, and I knew something was different.

I was so photosensitive that I couldn’t even be exposed to the spotlights that they had at the front of the church. “People don’t think about them, but those spotlights would cause such burning pain on my skin, and when I didn’t feel anything, I knew something was different,” said Wood.

We might expect that a person who found sunlight painful would take steps to ensure that her bedroom, at least, was dark. According to her testimony, however, she was in severe pain in bed, in the dark, when she woke up that morning. She had to be helped to move around as she “hobbled” on her cane, swathed in long skirts, long sleeves, gloves, hat, veil, and a hooded cape. She must have made quite a spectacle!

In any case, her story doesn’t quite match up with the symptoms of the disease as described in the professional resources. Nor do some of her other symptoms match those described by Merck and the APF. For example, Wood says:

“It’s really hard for someone that’s normal to understand that being exposed to sunlight is physically painful,” Wood explained. “It’s like my skin is literally lit on fire—a million beestings at once. And anytime I would get any prolonged exposure, I would blister, and I would swell up and turn purple.”

The name “porphyria” comes from the Greek word for “purple,” however the APF informs us that this is because of the effect the disease has on the color of the urine, not the color of the skin. “Urine from some porphyria patients may be reddish in color due to the presence of excess porphyrins and related substances in the urine, and the urine may darken after exposure to light.” And contrary to Wood’s testimony, Merck tells us that

In childhood, crusting may develop around the lips and on the back of the hands after prolonged sun exposure. Blistering and scarring do not occur. If skin protection is neglected chronically, rough, thickened, and leathery skin may develop, especially over the knuckles. Linear perioral furrows (carp mouth) may develop.

No mention in Wood’s testimony of crusting, leathery skin, or “carp mouth,” and no mention in the Merck article of blistering, swelling, or turning purple. In fact, Merck specifically states that in the EPP variety of porphyria, blistering and scarring do not occur.

Nor, by the way, is porphyria EPP a blood disease, as the trunews article claims. It’s a deficiency of the enzyme ferrochelatase in the tissues of the bone marrow, leading to a buildup of phototoxic protoporphyrins in the bone marrow and erythrocytes, which are then carried by the blood and deposited in the skin or filtered out by the liver and excreted in the bile. The ultimate cause is a defective EPP gene, coupled with an unusually low-output variant from the other parent. Thus, any miraculous cure would need to involve changing Wood’s genetic makeup.

Conventional treatment of EPP involves avoiding exposure to sunlight and fluorescent lights, taking beta carotene, and avoiding alcohol and fasting. According to Merck,

?-Carotene 120 to 180 mg po once/day in children or 300 mg once/day in adults produces a slightly yellow protective coloration of the skin and neutralizes the toxic radicals in the skin that cause symptoms. Another antioxidant, cysteine, may also lessen photosensitivity. The brown protective skin color obtained with topically applied dihydroxyacetone-3 is generally cosmetically preferable to the yellowish tint produced by ?-carotene.

If the above measures are ineffective (eg, increasing photosensitivity, rising porphyrin concentrations, progressive jaundice), erythrocyte hypertransfusion (ie, to above-normal Hb levels) can reduce the production rate of porphyrin-loaded RBCs. Administration of bile acids facilitates biliary excretion of protoporphyrin. Oral cholestyramine (Drug Information) or charcoal can interrupt the enterohepatic circulation, which increases fecal excretion. Liver failure may require immediate liver transplant.

Wood’s testimony mentions “blood transfusions,” but also implies that she had to endure serious dietary restrictions.

It was not until over two years ago doctors have been able to put a name to Wood’s condition as she became more ill and even came close to dying in the hospital. Because of this disorder, her diet was heavily restricted; she slept during the day and stayed awake at night to avoid sunlight; she experienced severe pain and muscle spasms and had to cover her body from head to toe if she was to be exposed to light.

Though painful and incurable, porphyria is not usually a fatal disease. There is the possibility of damage to the liver if the protoporphyrin levels are consistently too high, in which case the patient might suffer a liver failure that would be fatal in the absence of a transplant. Wood’s testimony, however, mentions nothing about any liver problems or jaundice or other symptoms normally associated with liver failure.

Can we rule out Wood’s testimony? Possibly, if we could get access to her medical records, and could do a 6-month follow-up to see how her cure was holding up. These same records, naturally, would also document the veracity of her claims, should she be telling the truth. All she needs to do is sign some release forms and turn those records over to the press, and one million dollars can be hers, compliments of James Randi. Assuming, of course, that she really did have an incurable genetic disease that was genuinely cured.

One final quote, though, comparing the beginning of the article with something Wood said at the end:

After the service was over, Wood spent time outside in the sun.

“I went outside, and I actually got to do what was fun for me. I had to go look at my dad’s car. He’d had a little coolant leak, and before I got sick I used to be a mechanic, so I went out and rolled up my sleeves and got down in his car—out in the sunlight and it didn’t burn. It felt good; it felt warm. I’ve never felt in my life the warmth of sunshine without feeling pain,” said Wood. [emphasis added]

Now look at the first line of the second paragraph again:

Thirty-year-old Jennifer Wood of Cleveland, Tenn. has been sick her entire life with a rare, incurable blood disease known as Porphyria type EPP.

So she’s been sick her entire life, but before that, she was a mechanic.

Call me skeptical.

 
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One Response to “Another “miracle”?”

  1. PalMD Says:

    There are dozens of types of porphyrias, many of which involve intermittent symptoms, and symptom-free intervals are the rule.