Recurring abdominal pain led surgeons to operate on Ginger Harvey in 2003, and they expected to find a hernia.
Instead, this was the first salvo of a cruel and mysterious illness, and the beginning of an eight-year search for answers.
“The doctor came into my room and said, ‘You’re never going to believe this! ... If I live to be 100, I’ll never see another one again,’” the resident of Keams Canyon (on Hopi land) recalled.
Harvey, now 60, had a growth the size of three golf balls next to her left kidney.
While it wasn’t cancerous, the painful growth tied into nerves and blood vessels and could slowly kill the organ to which it was attached.
Then these growths, called angiolipomas, began forming on much of her body.
Doctors had no name for the problem, and no certainty about how to treat it — until Harvey stumbled by sheerest coincidence onto a likely diagnosis this past November.
Treatment and a cure, however, remain elusive.
LITTLE SUPPORT INITIALLY
Surgeons took out part of Harvey’s left lung in 2003.
They removed her gall bladder in 2004, when the lipomas killed it.
They removed her thyroid in 2005.
Harvey has had nearly 1,000 of these growths removed, ranging in size from a pea to a golf ball.
“I kept thinking, ‘What is wrong with me?’” she said.
Because of its intensity, the illness dominated life for the wife, mother, quilter — and now grandmother.
Having fatty non-cancerous growths under the skin is normal in a human body — sort of like having freckles for some. But having them to this extent is not.
Because the problem was so unusual, Harvey found little support in the medical community.
When she called one specialist to describe the problem and ask for an appointment, the receptionist laughed and hung up the phone.
“It really hurt me,” she said, “I cried.”
BODY ON OVERDRIVE
Harvey’s growths trigger nerve-type pain — so intense that Harvey compares it to a sort of electrical storm, like someone playing pinball with the nerves inside her body.
For this reason, Harvey went eight years without more than 2 hours of sleep at a time.
She felt exhausted when she woke up in the morning, as if her body was on overdrive day and night and unable to rest.
She was hot, had headaches, and was in excruciating pain when the barometric pressure changed.
A 2-mile walk called for a 1.5-hour nap.
Tormented by constant pain for years, she once asked surgeon Dan Wesche to cut a little too deep during the routine removal of some of her growths and end her life and thus her pain.
He declined, but she was growing more hopeless and the future seemed bleak.
Harvey worried that she risked addiction to pain medication if she started it, and that it would also become ineffective if she took it for years.
She felt she had no good options.
CHILDHOOD URANIUM EXPOSURE
Researchers and physicians don’t know what causes Harvey’s disease, and there isn’t much research on it overall, but she has some thoughts.
Harvey’s dad was a uranium miner, and Harvey grew up with her siblings in Moab in the 1950s. They carried vanadium and uranium around as sort of trinkets, keeping it under the bed and in their pockets.
The kids lined up some of the uranium ore dad brought home at the stop sign, where trucks and cars would smash it into powder. Then they turned the powder into mud, and used it as body paint.
Moab was the hub for uranium mining and the home of a uranium refinery from 1956-1984. Today, it is the site of a major federal cleanup effort.
Harvey lived about 1 mile from that mill, and her dad worked there for a time, arriving home in clothes caked with uranium residue.
“There’s probably a connection between the uranium yellowcake, and for some reason at a later point in time, she developed these fatty tumors that press on nerves,” said Sue Collins, Harvey’s family nurse practitioner and herbalist.
Harvey’s dad died of an infection, and her mom has been highly susceptible to communicable illnesses for most of Harvey’s memory.
One of Harvey’s sisters suffers from a degenerative bone disease and is disabled.
Cancer is common in her family, and an aunt, uncle and cousin have died from it.
Harvey and one sister have had eye surgeries to replace corneas that fail in unusual ways, with Harvey’s becoming warped, which is especially uncommon.
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Harvey believes her childhood is directly related to her health problems as an adult.
“In my case, it’s the radiation exposure that started it,” Harvey said.
‘I GOT YOU, BABE’
Harvey has found an unusual coping strategy: The music of Cher.
She has a lot of good memories set to the songs of Cher, so when the pain intensifies, she recalls the songs in her mind.
“If it gets bad, she’s on my ears, and if it gets super bad, she’s on my ears and on TV,” she said.
The music got her through 2-hour surgeries to remove multiple angiolipomas — her body has become too accustomed to the drugs used to numb her, wearing off in about 10 minutes.
DIAGNOSIS VIA TV SHOW
November, however, brought a turning point.
A friend told Harvey about a television show describing a man afflicted with hundreds of painful, non-cancerous growths under his skin, and for each one doctors removed, more grew back.
Harvey got the name and contacted her doctors, who had been racking their brains looking through medical databases for an answer.
Dercum’s Disease was identified in 1888 and remains so rare that medical journals use a case of it to quiz physicians about whether they can identify the unnamed disease — the New England Journal of Medicine did just that in 2006.
Dr. Andrew Saal, of North Country HealthCare, examined Harvey in November, asking every possible question about symptoms and history before making the official diagnosis: A serious form of Dercum’s Disease, which causes painful fatty tissues mainly affecting women, tiredness, swelling, bruising, stiff joints, headaches, irreversible weight gain, bouts of depression and feeling hot.
Harvey had all these symptoms.
“It’s a very unusual, difficult disease,” Collins said.
Other patients sometimes have different forms of Dercum’s, with non-painful growths (not tied to nerves) called lipomas only on their knees, hips or arms.
Some have these painless growths on the gluteal area, stomach and on the soles of their feet.
Various groups on the Internet discuss individual cases of the disease, detailing how they found out what they had, the difficulties of diagnosis, and sharing what treatments have worked, sometimes including liposuction to remove the growths.
There is no cure.
Harvey felt it was a step forward to have a diagnosis for the mystery problem, allowing her to reach out to others who have it.
From a statistical standpoint, Saal told her having the disease is probably something like a 2-in-a-million likelihood.
Having a diagnosis, Saal prescribed Harvey a low dose of an anti-seizure medication to dampen the pain signals running down her nerves.
The medicine and more surgery to remove the growths were the plan.
She waited for weeks last winter, hoping each morning even for the unpleasant side effect of an extremely dry mouth from the medicine.
But nothing happened.
FINALLY, SOME SLEEP
Harvey has good insurance through her husband’s work as a medical technologist for the Indian Health Service at Hopi, but her Flagstaff surgeon has dropped her case for unknown reasons.
Next, she and Saal tried a powerful anti-depressant that was intended to block pain, and for the first time since 2003 Harvey really slept.
Not for an hour or two, but for seven.
“I woke up that morning and I was like, ‘Oh, this is what it’s like to get sleep!’” she said.
However, she had a frightening allergic reaction to the medicine a few days later.
As a result, she’s also trying herbal remedies on Collins’ advice, such as skullcap, lemon balm, passion flower and turmeric, and they seem to be working, providing five to seven hours of sleep.
Harvey has counted more than 420 of the growths under her skin today, and she can feel new ones as they form.
There are more medications to try that could reduce pain, and she plans to give them a go someday.
SEEKING A SURGEON
Today she seeks a surgeon.
“I feel like having the diagnosis is a step forward, because I don’t have to wonder what it is,” she said, “and I’m hoping that there is a doctor out there who is willing to say, ‘Hey, I’ll take you on’.”
Cyndy Cole can be reached at 913-8607 or at email@example.com.