How PML-N, Asif Zardari and Asfand Yar Wali Support India on Dams in Pakistan
Online Support for Families of PML Patients
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Progressive multifocal leukoencephalopathy (PML) is a mouthful to try to pronounce. Unfortunately, many multiple sclerosis patients who were diagnosed early on with the Tysabri-induced version of the disease cannot even try… They are dead.
The disease of the brain had previously been seen mostly in people with severely compromised immune systems (as in the case of AIDS or drug induced immunosuppressence for organ transplants) and was almost always fatal. The same was true for many of the first PML patients in the Multiple Sclerosis community.
While new treatments - including plasmapheresis - have reduced the mortality rates of PML they have not eliminated the risk nor can they repair damage done by the insidious infection.
The makers of Tysabri are hoping to have a helpful predictor test for PML on the market soon.
Still, there is a glaring void in this whole discussion: help for the families of those 80-odd people who have contracted PML.
Last week, I was notified by , that a small group of survivors, family of patients with PML and their supporters have started an online support group via their Facebook page: Tysabri & PML.
The stated reason behind the founding of the page (by the husband of a PML patient) is to “… ensure that the actual evidence of this disease is made known.” A lofty goal when you consider the un-moderated nature of social media, but I wish them well!
And I think we all send our best wishes to those battling every day with the effects of PML.
Wishing you and your family the best of health.
Don’t forget that you can also follow me via our Life With MS Facebook page and on Twitter.
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