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Thread: Transverse Myelitis Meeting in Baltimore due to relentless campaigning of a teenager

  1. #1
    Banned Faye's Avatar
    Join Date
    May 2003
    Jacksonville, FL

    Transverse Myelitis Meeting in Baltimore due to relentless campaigning of a teenager

    Scientists Work on Cure for Nerve Disease

    Mon Aug 16, 8:22 PM ET

    By LAURAN NEERGAARD, AP Medical Writer

    WASHINGTON - Dr. Douglas Kerr painstakingly collected spinal fluid from hundreds of patients with a mysterious disease that can paralyze within hours of attacking - and thinks he may have found a way to fight back.

    Transverse myelitis, which is inflammation of the spinal cord, is rare. But, importantly, it may share common triggers and treatment approaches with a dozen illnesses - such as Guillain-Barre, myasthenia gravis, multiple sclerosis - that all attack the nerves, spinal cord or brain.

    So Kerr is bringing international specialists together in Baltimore this week to pool their resources in the fight against these diseases. And furiously taking notes will be dozens of patients desperate to learn the latest research, an unusual meeting largely due to the relentless campaigning of a teenager.

    "This is a really big dream of mine," says Cody Unser, who is paralyzed from the chest down by transverse myelitis. "All the doctors, now they're sharing data and talking, and that never was before." She is the daughter of race car driver Al Unser Jr.

    Seeing patients in the audience, the Albuquerque, N.M., 17-year-old believes, is an important motivator for researchers more used to a lab: "There's this understanding of what science means to a person."

    Neuroimmunologic diseases can have very different symptoms: Some kill or paralyze; others weaken or blind. Some patients recover, although there's no good way to predict. But the underlying mystery is why the immune system suddenly malfunctions and attacks the central nervous system.

    Now research is pointing to a host of potential culprits these illnesses may share, disease triggers and damage-spurring abnormalities that in turn suggest new treatment strategies.

    "We think we're on the verge of better, more targeted therapies for the immune system gone amok," says Kerr, who heads the transverse myelitis center at Johns Hopkins University and is coordinating the neuroimmunology meeting, which begins Thursday.

    On the agenda:

    _Scientists recently discovered that an anemia drug called erythropoietin, or EPO, seems to protect central nervous system cells from inflammatory damage. A Hopkins researcher, Sanjay Keswani, is beginning a study of whether EPO can protect patients' spinal cords from transverse myelitis' inflammatory assault.

    _Kerr's own study of spinal fluid found that transverse myelitis patients harbor the chemical interleukin-6 at "levels never before seen in human disease." At high levels, the normally protective chemical turns deadly, triggering a cascade of cellular aberrations that ultimately chews up spinal cord cells, he explains.

    Thalidomide, the notorious birth defect-causing drug now used to treat leprosy, can block IL-6, Kerr says. If upcoming animal tests pan out, he hopes to begin studies in transverse myelitis patients early next year.


    "We have a chance to take a giant stride forward for the good of all humanity" in the next election. "We can choose between the future and the past, between reason and ignorance, between true compassion and mere ideology."- Ron Reagan Jr.

  2. #2
    Senior Member lynnifer's Avatar
    Join Date
    Aug 2002
    Windsor ON Canada
    Faye -

    Thank you so much for posting this. I am constantly on the look out for new information on TM.

    I sooo wanted to make this meeting but I couldn't get the time off of work. Someone with more seniority than me will be drinking and fishing on his time off ... oh well. lol

  3. #3
    Just wondered how many others here have TM, my hubby had TM 6 years ago is still a complete T1 para.

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