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Author Topic: PML Survivors!  (Read 1437 times)

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Offline PDXRon31

  • Member
  • Posts: 45
    • PML Survivors & Supporters
PML Survivors!
« on: June 27, 2006, 07:21:30 PM »
Hi! My name is Ron and I am living with HIV and PML. Myself and a fellow PML survivor wanted to test the viability and usefulness of an email support group for others affected by PML. Therefore I have started a Yahoo Group to facilitate this idea. I personally will be posting more details of my own struggle with this illness and invite others to do the same on the site. It seems little is still known of this affliction, so at best this could lead to new ways of seeking treatment for some and at least a forum for finding inspiration and venting frustrations for others.  It has been personally frustrating and isolating for me not being able to efficiently find others with stories to share regarding their experience with PML. I thought it might be helpful to initiate an informal group to alleviate some of this frustration. I ask that you take a moment to join this group TODAY! Please be kind and share anything that you feel willing to share, be it about affective medical treatments, recovery successes, relationship struggles, rejection, finding employment, whatever! Your story just may prove invaluable to another. I am going to post this invite here and on THEBODY.COM, but PLEASE do your own soliciting so that this can grow. Thanks very much for your time!

http://health.groups.yahoo.com/group/PMLSurvivors/

Related Link:     http://www.ninds.nih.gov/disorders/pml/pml.htm
Post message:     PMLSurvivors@yahoogroups.com
Subscribe:     PMLSurvivors-subscribe@yahoogroups.com
Unsubscribe:     PMLSurvivors-unsubscribe@yahoogroups.com
List owner:     PMLSurvivors-owner@yahoogroups.com
« Last Edit: June 28, 2006, 03:09:52 AM by PDXRon31 »
Diagnosed with HIV in 2000
Diagnosed with PML in 2005
Diagnosed with Fabulosity at birth

Current treatments: Sustiva, Combivir, K-PAX supplements, and Myelin Sheath Support.
Last labs: September 2006
CD4 507 VL Undetectable

Offline cmhjeff

  • Member
  • Posts: 870
Re: PML Survivors!
« Reply #1 on: June 27, 2006, 07:38:36 PM »
Nice to meet you Ron, I was diagnosed with PML about a year ago and will be sure to join.  The subscribe link is an email address but I'll do a search on Yahoo to find the group and join.  What a wonderful idea as I am finding/hearing about others with PML.

Take care
Jeff

Offline PDXRon31

  • Member
  • Posts: 45
    • PML Survivors & Supporters
Re: PML Survivors!
« Reply #2 on: June 28, 2006, 03:12:49 AM »
Thanks Jeff for bringing that to my attention!

Ooops! My silly mistake. I am correcting it. I see you have found it on Yahoo and signed up. I look forward to hearing about your experiences. I posted mine tonight. The web address is: http://health.groups.yahoo.com/group/PMLSurvivors/
Diagnosed with HIV in 2000
Diagnosed with PML in 2005
Diagnosed with Fabulosity at birth

Current treatments: Sustiva, Combivir, K-PAX supplements, and Myelin Sheath Support.
Last labs: September 2006
CD4 507 VL Undetectable

 


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