Monday, July 28, 2008


New drug offers hope for severe MS sufferers
Chicago Daily Herald - Chicago,IL,USA
The drug being studied in the clinical trial is known as MBP8298. In earlier trials in Canada and Europe, it has shown promise as a treatment for ...
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Daily Herald | New drug offers hope for severe MS sufferers

By Matt Arado | Daily Herald Staff

Every day, Bloomingdale resident Erin Zwirlein grabs a cane and goes for a one-mile walk.

Erin Zwirlein of Bloomingdale has MS and is taking an experimental drug for treatment. Here, she gets a hug from her daughter Morgan, 9.
Bev Horne | Staff Photographer
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Erin Zwirlein of Bloomingdale has MS and is taking an experimental drug for treatment. Here, she gets a hug from her daughter Morgan, 9.

Bev Horne | Staff Photographer

She returns to her townhouse tired, a bit unsteady, but happier than she ever thought possible.

Zwirlein, 36, has the worst kind of multiple sclerosis: the "secondary-progressive" type, defined by a steady and relentless worsening of the disease without any periods of improvement.

As recently as last year, the disease wouldn't let her complete a one-mile walk. Even a shorter one could leave her too tired to stand up.

The difference between then and now is that today, Zwirlein is a participant in a clinical trial of a new drug that doctors hope will be the first to offer viable relief to people with her type of MS.

"I feel so good," she said. "It's like I'm getting my life back."

Zwirlein doesn't know for sure that she's actually getting the drug; half of the 510 patients in the trial get the drug and the other half, a placebo. But she feels good about her chances.

"I'm a positive person," she said. "But I don't think my brain could make these improvements happen on its own."

Dr. Daniel Wynn, the Northbrook physician who invited Zwirlein to participate in the trial, said the drug is one of the most exciting developments he's seen in his 30 years of involvement with MS research.

Up to now, the only existing treatment for secondary-progressive MS is a chemotherapy agent that has limited use because of its toxic effects on the heart. In earlier trials, the only side effect that the new drug has caused is a harmless and temporary flushing of the skin, he said.

"This could be a gigantic advance," Wynn said. "To have something that will help those with the worst form of a terrible disease is a very big deal."

First symptoms

MS remains a mysterious disease, even though roughly 200 people are diagnosed with it each week. Medical experts believe that in MS patients, the body's immune system inappropriately attacks the healthy tissue that coats nerves in the brain and spinal column. The result is an unpredictable, wide-ranging array of symptoms that includes abnormal fatigue, tremors, vision problems and muscle failure. There still is no cure for the disease.

Zwirlein's symptoms first appeared in 1999, when she lived in Wisconsin with her husband and infant daughter.

She experienced bouts of disorienting vertigo. She had trouble keeping her balance. And in a particularly frightening instance, she dropped her baby.

"My arms just gave out," she said. "It was like I didn't have any control. I knew that wasn't normal."

When the diagnosis came, it hit Zwirlein hard. She fell into a near-depression, wondering if her life was coming to an end.

"I went through a period where I'd just start bawling," she said. "It was very bad."

Soon, though, Zwirlein realized she had a choice: Let the disease take over her life, or fight. She decided to fight.

"I'm not the type to just do nothing," Zwirlein said.

So she worked with her doctors on a drug treatment plan. Like most people with MS, Zwirlein was initially diagnosed with the "relapse-remitting" form, in which MS "flare-ups" alternate with periods of recovery. The FDA has approved a number of drugs that can slow the frequency and intensity of attacks in people with this type of the disease.

While undergoing treatment, Zwirlein stayed active. She went back to work, taking a job as a welder in a factory. And she wouldn't let anyone feel sorry for her.

"It might have been a pride thing, but I didn't want anyone to treat me special," she said. "We had a scooter in our garage, but I refused to use it. During a trip to Ireland, I refused to get in a wheelchair, no matter how tired I got. I wanted to show everyone that I was still alive, even though I had this disease."

Zwirlein's fight hit a roadblock when her marriage began to crumble. In 2004, she left her husband and brought her daughter, Morgan, with her to Bloomingdale. The move put her six hours away from her doctors, left her without a job and sparked a stressful custody battle with her husband.

At the same time, Zwirlein's symptoms worsened. The leg brace she'd been wearing for support was no longer enough; she often had to use a cane when she walked. Occasionally, Zwirlein became so weak that she could move only by crawling on the floor.

Searching for a doctor close to home, Zwirlein discovered Wynn's medical office, Consultants in Neurology. She underwent a screening, which revealed some bad news: The disease had advanced to the secondary-progressive stage.

Still, Zwirlein didn't give up hope. She wasn't about to let the disease ruin the new life she was trying to create for herself and Morgan. When Wynn told her about the clinical trial, she jumped at the chance.

"I told Dr. Wynn that the one thing I wanted was to run again with my daughter," Zwirlein said. "I would do anything to make that happen. I know that the trial is a roll of the dice, but Morgan's suffered enough through all this. She's probably suffered most of all."

'You can't give up'

The drug being studied in the clinical trial is known as MBP8298. In earlier trials in Canada and Europe, it has shown promise as a treatment for secondary-progressive MS.

"It appears to slow the progression by five years or more," Wynn said. "That would have a huge impact on people with this form of MS. It could mean the difference between using a cane and using a walker. Or using a walker and using a wheelchair."

Wynn said that the drug seems to defuse the immune system's impulse to attack healthy tissue, similar to how allergy medications stop the body from reacting to pollen or ragweed.

It takes just a few minutes to administer the drug via an IV, and it has not produced any serious side effects so far, Wynn said.

The trial is scheduled to last two years, but Wynn hopes the FDA will approve the drug early once results from the Canada and Europe trials are finalized.

Zwirlein reports that since starting the trial in January, she feels stronger and walks better. She still wears a brace, but she sometimes can complete a one-mile walk without the help of a cane.

"I can't quite run with Morgan yet," she said with a laugh. "But I'm getting there."

Zwirlein hopes that her battle with the disease will inspire other MS patients to keep up the fight, even when things look grim. Toward that end, she's written an article for a medical magazine that takes a humorous look at her experiences.

"You can't give up. You have to keep up the drive to make yourself better," she said. "I sometimes feel like God gave this disease to me because other people just couldn't handle it."

Zwirlein misses working, and getting a job remains at the top of her priority list for the future. She knows it will be tough, especially because of persistent misconceptions about her disease.

"It's funny - people think that your brain doesn't work anymore, that you can't do anything, that you won't strive for anything," she said. "I hope I can show people how wrong that is."


Elan reports 31800 Tysabri patients
Irish Times - Dublin,Ireland
Biotech company Elan, Ireland's biggest drugmaker, said 31800 patients were using its multiplesclerosis treatment Tysabri at the end of June. ...
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\Elan revenues boosted by Tysabri sales
Ireland Digital - UK
Elan Corp, the Irish drugmaker, said its first quarter financial results were boosted by sales of the MS drug Tysabri. The drug achieved market sales of ...
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The image “” cannot be displayed, because it contains errors. Daily Living with MS

Ms. Chadha

Director of Litigation, ARCH Disability Law Centre
View BIO

Q :
A friend of ours in the UK has asked if we can help provide information to a friend of hers who would dearly love to move permanently to Canada. The potential candidate is fully employed as a web designer. However, she has MS.
Given the considerations for medical review that applicants for Permanent Residency must undergo, is MS an absolute ground for refusal of application (perhaps from the ' undue burden to Canadian health services' provision?)

A :
I am unable to definitely state whether a person with MS would be denied permanent residency status in Canada.
Most persons who are applying to immigrate to Canada must undergo a medical examination. Under section 38(1)(c) of the Immigration and Refugee Protection Act (IRPA), an applicant’s medical condition would be tested against three health grounds for inadmissibility:
danger to public health,
danger to public safety, and
excessive demand on health or social services.

If the person with a disability is being sponsored to come to Canada and is the spouse or dependent child of the sponsor, the test of “excessive demand on health or social services” may not be applied in that person’s application.
While each applicant is to be assessed on an individual basis and the unique circumstances and medical history of the individual’s condition are to be considered, the estimated cost arising from the individual’s condition is evaluated against a pre-determined figure that the government has established. This figure is determined by the government’s evaluation of the per capita costs of health care for the applicant’s age and gender applied over a certain time period.

I am aware of one Canadian Federal Court case that was determined under a former immigration statute wherein an applicant was denied permanent residence in Canada due to MS because of the costs associated with on-going monitoring of MS and the medicine that is used in the treatment of MS. This Federal Court judgment was not appealed.

In a subsequent Supreme Court of Canda Case decision, the Supreme Court held that non-medical factors such as the availability, scarcity or cost of publicly funded services along with the willingness and ability of an applicant or his or her family to pay for the cost of private support should be taken into consideration when determining if someone is medically inadmissible. The applicant in this case was a dependent child with a developmental disability. In this case, the Supreme Court noted that since the applicant had a developmental disability, he would be accessing Canadian social services rather than health care. In addition, the primary applicant (the child’s father) was a business applicant so the family’s financial status was a significant factor in the application process. The Supreme Court sent this family’s application back to Canada Immigration for reconsideration and the application has not yet been finally determined.

Unfortunately, a long line of Canadian caselaw reveals that applicants with disabilities are often denied admission to Canada because of the costs associated with medical and rehabilitative care and disability aids and equipment. Serious health conditions requiring on-going care, treatment or hospitalization are likely to be considered inadmissible because the costs of care, treatment and hospitalization would likely be much greater than the per capita costs of that the applicant’s age or gender to the Canadian health-care system.

There is a lot of information about applying for permanent residency available on Citizenship and Immigration Canada’s website which your friend may wish
to read at:
7/29/2008 1:11:14 AM
More answers from Ms. Ena Chadha
More answers in the category: Daily Living with MS

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Hope for MS sufferers as city scientist nears breakthrough

Published Date: 28 July 2008


AN Edinburgh scientist is nearing a breakthrough that will revolutionise the treatment of Multiple Sclerosis and change the lives of generations of future sufferers.

Edinburgh University's Professor Charles ffrench-Constant, whose work has largely been funded with £2 million from the author JK Rowling, below, is working on a way of using stem cells to halt the deterioration of sufferers.
He is carrying out tes

ts on mice and rats to try to find a way of using the cells to repair damage to the brain.
Combined with the earliest possible detection of MS in patients, Prof ffrench-Constant's work offers the best hope of eradicating its devastating effect on patients.

He recently appeared in a documentary made by journalist and MS sufferer Elizabeth Quigley, who sees his tests as a possible "cure", although sadly for future generations rather than herself.

Prof ffrench-Constant, head of the Edinburgh University Centre for Translational Research, is reluctant to talk so boldly, but is confident that progress can be made in combating the disease which affects about 10,000 Scots.
He said: "We need to identify targets – molecules that contribute to the repair process in the brain. We have identified one interesting new candidate and are progressing with that, as well as trying to identify others.

"Once we have a positive target we have to see if it is present in patients with MS, we can't assume that just because it's worked on rats and mice.
"The MS Society has a brain bank with lots of tissues from people who have died from MS. If it is present we would run tests to see whether manipulating the target would have the result we hope. Then we would have the long, complicated process of developing the drug."

This means a treatment being available to patients in the UK is likely to be ten or 15 years away, although, for many people living with a history of MS in their family that will be a comforting thought.
Where MS comes from and what triggers it remains a mystery, but it is believed to be at least partly hereditary.

It is sometimes known as the "Scottish disease" as this country has the highest concentration in the world. It can also be found abroad in areas which have a large Scottish community.

Countries with a similar latitude to Scotland also have high rates of MS, suggesting that temperature or sunlight could be a factor, and childhood illnesses are also common among sufferers who develop MS in later life.
About 85,000 people in the UK suffer from MS, the result of damage to myelin, which blocks signals from the brain, prohibiting things like movement and speech.
A drug that could undo that damage remains the stuff of science fiction, but Prof ffrench-Constant believes something that could stop further degeneration is within reach.

This combined with early detection to ensure sufferers are treated when their health is still relatively good, could seriously limit the effect MS will have on future generations.
Ms Rowling, whose mother died in 1990 from respiratory problems linked to MS, has said:
"It would mean everything to me if I thought that as a result even one person did not have to go through what my mother did."
Mark Hazelwood, director of MS Society Scotland, said: "The MS Society Scotland was delighted to be able to provide £2 million funding to help establish this important and groundbreaking centre in Edinburgh."

The full article contains 585 words and appears in Edinburgh Evening News newspaper.

Page 1 of 1

  • Last Updated: 28 July 2008 10:55 AM
  • Source: Edinburgh Evening News
  • Location: Edinburgh


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