Monday, November 16, 2009

Wisconsin Considers Pot to Ease the Pain

Wisconsin Democrats seek to ease the pain of cancer patients, and others with serious chronic pain, by legalizing medical marijuana.

Wisconsin Democrats support medical marijuana

Legalizing medical marijuana will ease the cancer patients' pain and help others who are suffering, supporters of legalization argued Monday.

Two Democratic state lawmakers, advocates and those fighting chronic diseases said at a news conference there is momentum nationwide to decriminalize the use of marijuana for medical reasons.
They pointed to Gov. Jim Doyle's comments last month in support of legalizing medical marijuana for people who have a doctor's prescription. Also, the American Medical Association called last week for a federal review of marijuana's status as a controlled substance to make it easier to do research that could lead to development of marijuana-based medicines.

Everyone knows someone who would benefit if the law were changed, said Jacki Rickert, founder of "Is My Medicine Legal Yet?" She suffers from Ehlers-Danlos syndrome and reflexive sympathetic dystrophy, bone and joint diseases that limit movement and lead to painful muscle spasms. Marijuana eases the pain, she said.

Rickert, 58, has lobbied more than a decade to legalize medical marijuana in Wisconsin. She was arrested in 2000 when Mondovi police raided her home and confiscated marijuana. The district attorney later declined to press charges.

"We're not criminals, we're just people trying to get on with our lives," said Gary Storck, who said he starting using marijuana in 1972 to treat his glaucoma and arthritis.

A similar bill was introduced in the Legislature in 2002 but did not pass.

Under the measure co-sponsored by Rep. Mark Pocan, D-Madison, and Sen. Jon Erpenbach, D-Waunakee, a person would need a prescription from a doctor to receive marijuana, which could either be grown at home or obtained through a licensed nonprofit dispensary. The state would keep a registry of both those who can receive and dispense marijuana.

The Department of Health Services could not estimate how many people would qualify for marijuana prescriptions, according to the fiscal estimate for the bill. Seventeen of 132 lawmakers have signed on in support.

"This law needs to be changed," Rickert said. "We can't wait any longer."

Thirteen states have legalized medical marijuana, according to the National Organization for the Reform of Marijuana Laws. The Wisconsin bill is up for a hearing Dec. 15, and Erpenbach said the goal was to have it voted on sometime in January.

The governor said last month that he had no problem with the use of marijuana to treat severe pain and other medical conditions, if it's prescribed by a doctor. Restricting the use of medical marijuana makes no sense when doctors can already prescribe more dangerous drugs, such as morphine, he said.

Doyle's comments come after a decision by the Obama administration not to prosecute users and suppliers of medical marijuana in the states where it's been legalized. The decision is a clear break from the policies of the Bush administration and another sign pointed to by backers of Wisconsin's bill that the attitude toward medical marijuana is changing.

Sunday, November 15, 2009

Teen Gets Relief From Ehlers-Danlos

Finally, a success story!

South Carolina Teen Gets Real Treatment
Two years ago, Mathis began having nonstop headaches that couldn't be explained.A year later, her legs started to feel numb and she walked with short, slow steps.
Two surgeries later, Mathis now walks with a normal stride, drives and dances. She's taking a new approach to life.
"She's a bit of a miracle child," said her grandmother Pat Mathis. "A lot of prayers went up for her, and the Lord answered them."
Mathis, 19, was diagnosed with Ehlers-Danlos syndrome, a neurological condition, last December. She visited several doctors who couldn't explain the headaches or what caused her legs to give out. It was frustrating; at times, she felt as if people doubted what she complained of feeling.
"It was very difficult," Mathis said. "It was a lot of going to doctors who said, 'Maybe it's this,' and they'd do tests and my tests would come back normal. We could see how things were getting worse, but no one could do anything about it."
She visited family doctors, neurologists, ear, nose and throat doctors and a chiropractor. Mathis was told she might have had migraines, lupus or fibromyalgia.
"It was frustrating," said her mom, Lisa Mathis. "There was never an option to not follow up on what was going on."
Once Mackenzie had difficulty walking long periods of time and needed wheelchairs at the mall and the airport, the family started searching harder.
A family friend got Lisa Mathis in touch with a family whose children were diagnosed with Ehlers-Danlos. The symptoms that family's children experienced matched what Mackenzie was dealing with. Lisa Mathis said this helped get the family on the right track to find a diagnosis.
Ehlers-Danlos is a collection of genetic disorders that affect collagen, a protein that adds strength and elasticity to connective tissue. Patients often experience a downward pull of the spinal cord, which causes Chiari malformation.
According to Mackenzie's doctor, that's when the cerebellum, which controls balance, and the brainstem push downward. The pressure creates a range of problems, including the headaches and balance issues she experienced.
Changing her life ... and others'
She underwent two surgeries that have returned her life to normal.
One surgery removed some of the ligament that pulled her spinal cord downward. The second surgery was a cranial spinal procedure, which improved the relationship between her skull base and her upper spine to eliminate the brain stem's deformation.
"Those two surgeries completely changed my life, and I can now do things I didn't think I would do again," Mackenzie said.
Lisa Mathis said her daughter's recovery was quick compared with some who have been diagnosed with Ehlers-Danlos.
"Her story is not typical of these patients, probably because we moved quick compared to others," said Lisa Mathis, who said it sometimes takes people 10 to 20 years to receive an Ehlers-Danlos diagnosis.
Mackenzie Mathis is helping other Ehlers-Danlos families. She's learned that about 50 families in North and South Carolina are dealing with the condition. In January, she'll host a support group for those families in Spartanburg. Her neurosurgeon is based in Bethesda, Md., and she serves as a spokeswoman for the hospital and answers questions from Ehlers-Danlos patients through e-mail and Facebook. She's also blogging about her recovery, and the blog has been read by people as far away as the United Kingdom.
 If more people know, more people will be diagnosed!

Teen Dies From Ehlers-Danlos: Classmates Plant Tree

We are saddened by the death of Forrest Goetsch, a fourteen-year-old athlete, whose courage in the face of Ehlers-Danlos Syndrome inspired his classmates to plant a tree in his honor.
It was just an honor to be able to call him one of your friends," Nick said of Forrest.Beyond physically grueling sports, Forrest endured multiple surgeries for a bilateral facial cleft that affected his appearance, Steve Goetsch said.
We are a bit puzzled by broader story, however. It appears that Ehlers-Danlos was not originally listed as his cause of death.
An autopsy showed that a D.C. Everest Junior High student who died Sept. 21 during cross country practice suffered from a genetic connective tissue disorder, according to the Marathon County Medical Examiner’s office.

Fourteen-year-old Forrest Goetsch died from complications of Ehlers-Danlos Syndrome (EDS), Marathon County Deputy Medical Examiner Jean Finley said today. A preliminary autopsy done shortly after his death indicated Goetsch’s death was from cardiac-related natural causes.
We can't help but wonder how many similar instances might be the result of underdiagnosis, due to a lack of general awareness of this disease.

Playing Through Pain

Playing through pain, this pianist sings with his fingers.
"If there's a moment of trauma, or a moment of triumph, hopefully [listeners] will feel they've been taken on a compelling emotional journey and can attach that to whatever resonates with them," he said. "As I was writing, I was able to get pretty deep into some of the specific things that I was processing and, at the same time, not have to have that manifest in the finished product in a way I had to be too concerned about."

Baerman tends to downplay some of his accomplishments, most notably the very act of playing piano, as a person with a painful, degenerative condition known as Ehlers-Danlos Syndrome. Therefore, the following statement bears particular attention: "Ultimately, I'm really happy with ["Know Thyself"]. I think I've managed to come up with something that's emotionally substantial, certainly the most intense and most genuine work I've produced to date."