PP Medical Report (2009)

Stephen Cannon, MD, MDA-Funded Researcher and Member of the MDA Scientific Advisory Committee provides an MDA Research Report on Periodic Paralysis (PP) - 2009

Category:

Nonprofits & Activism

Tags:

• Periodic paralysis
• MDA
• medical
• healthcare
• Stephen Cannon
• research
• Muscular Dystrophy Association
• research update
• Nancy O'Dell
• MDA National Vice President
• Periodic Paralysis

[HKPPresearchandcure]

I think we have to give thanks to Dr. Canon even if he does not grasp the full "patient experience": he was speaking to the very lovely entertainment person, not medical personel. To raise moneys and find a cure if it's all glum and doom, nobody will donate if it's all just "too late". Keep Hope Alive! Even if this video is clear soft core PR.

[Beachmom64]

Continued for KC - This demonstrates the vast difference in medical opinion between physicians on the forefront of this disease. Possibly, the MDA could underwrite a detailed survey of all PP patients, to give physicians accurate information. It is not simply a disease of occasional muscle weakness/paralysis, but affects cognition and vision. Many physicians may not recognize these as part of the clinical picture, thinking that periodic paralysis is simply what its name describes.

[Beachmom64]

For KC - Dr. Cannon, thank you for helping get the word out about periodic paralysis. We are a family whose affected member's strength is fairly normal between episodes. However, it is ironic that Dr. Robert Griggs examined two of our family members and feels they don't have PP specifically because "strength was normal between episodes". Dr. Griggs explained that "virtually all patients I have seen with periodic paralysis have detectable weaknesseven when patients are not having an attack."

[thinkhospice]

Dr. Cannon, with due respect I have to disagree with your comments regarding periodic paralysis. I have had this diesease since birth and I am genetically diagnosed. This is a severe disease resulting in loss of muscle over a period of years with some patients, like myself, becoming wheelchair bound. This is a severe disease and patients die if they do not receive the proper treatment from medical professionals who do not know how to treat us! I know becasue I have lost a brother and father.

[hkppNonoise]

What a bunch of crazy talk from a well respected doctor. I was diagnosed about 50 years ago and now confirmed with genotype R1239H. All the while I’ve been on the cutting edge of the best of the medicines, but at the present time I can barely walk and I have daily attacks that do not just resolve, none ever have.

[beck7422]

Recovery is not total or spontaneous. It might look that way to an outside viewer, but for the person with Periodic Paralysis they will feel tired and weaker than they did before the attack started. The more attacks you have, the slower the recovery and the weaker you are in-between attacks.

[HG1Z]

This video demonstrates a serious problem: Researchers such as Dr. Cannon play a vital role in expanding our gene based knowledge of Periodic Paralysis. What is lacking is a bridge between the lab research and the actual symptoms patients live with. The greatest success will come when fine researchers such as this acknowledge the limits of their lab based information, and support accurate documentation of patients symptoms that the medical community can use to guide better treatment .

[HG1Z]

The Periodic Paralysis community welcomes enquiries and would be grateful to share accurate, up to the minute information with individuals and organizations who demonstrate that they will use the information responsibly for the good of all.

h k p p . o r g w w w . p e r i o d i c p a r a l y s i s . o r g

[HG1Z]

I am dismayed by this inaccurate portrayal of Periodic Paralysis! While patients can and do have mild attacks of paralysis that are little more than a nuisance, the attacks range from mild to life threatening. Leaving attacks untreated sets the stage for abortive attacks- long periods of impaired function that can last for days, weeks, even months. This is even after potassium levels have returned to "normal". Despite rigorous management techniques every single day my loved ones still suffer.

[Beachmom64]

Respectfully, Dr. Cannon's description of "entirely normal strength and function between episodes" is not true of many, if not most, patients with periodic paralysis. And without medical intervention episodes may "resolve spontaneously" with cardiac and respiratory arrest, and death, as it did in my brother. This clip leaves the impression the PP is a "nuisance" disorder, which is easily managed. It is not. It destroys muscle and leaves patients disabled. Over a dozen family members affected.