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For those who know our dear Angela of Flowers4MS--she has confirmed PML from her Tysabri infusions.
She is now in Johns Hopkins, receiving plasma exchange. Her husband has been updating us on her condition.
Angela has been our translator for Dr. Zamboni's interviews, since she is Italian born. She has confirmed CCSVI, but has not been able to be treated. She needs our good thoughts and prayers. Here is her charity where she has been raising money for CCSVI research: http://www.flowers4ms.com/
For info on Angela's condition---
cheer
Re: Angela has PML...
Posted: Thu Oct 21, 2010 9:09 am
by prairiegirl
She needs our good thoughts and prayers.
cheer[/quote]
The many, many heartfelt posts on her site and on CCSVI FB, are testimony to how many people have been touched by Angela's kindness and generous spirit. Hope she recovers well!
Re: Angela has PML...
Posted: Thu Oct 21, 2010 9:25 am
by Donnchadh
cheerleader wrote:For those who know our dear Angela of Flowers4MS--she has confirmed PML from her Tysabri infusions.She is now in Johns Hopkins, receiving plasma exchange. Her husband has been updating us on her condition.
Angela has been our translator for Dr. Zamboni's interviews, since she is Italian born. She has confirmed CCSVI, but has not been able to be treated. She needs our good thoughts and prayers. Here is her charity where she has been raising money for CCSVI research: http://www.flowers4ms.com/
For info on Angela's condition---
cheer
What is PML?
Donnchadh
Re: Angela has PML...
Posted: Thu Oct 21, 2010 9:47 am
by bretzke
Donnchadh wrote:
What is PML?
Donnchadh
Progressive multifocal leukoencephalopathy (PML), also known as progressive multifocal leukoencephalitis, is a rare and usually fatal viral disease that is characterized by progressive damage (-pathy) or inflammation of the white matter (leuko-) of the brain (-encephalo-) at multiple locations (multifocal).
It occurs almost exclusively in people with severe immune deficiency, such as transplant patients on immunosuppressive medications, patients receiving certain kinds of chemotherapy, patients receiving natalizumab (Tysabri)[1] for multiple sclerosis, psoriasis patients on long-term efalizumab (Raptiva)[2] or AIDS patients.
It is caused by a virus, the JC virus, which is normally present and kept under control by the immune system. Immunosuppressive drugs prevent the immune system from controlling the virus.
..touch her body with the warmth of Your healing Presence. Grant her courage to face the future.. and the comfort of persons who care about her as she reaches for Your loving Hands..
Posted: Thu Oct 21, 2010 12:02 pm
by 1eye
Please, Angela, get better soon. You are needed and much loved.
angela
Posted: Thu Oct 21, 2010 12:33 pm
by blossom
warmest thoughts and prayers to angela and her family. what a blow to try to be well and get this.
Re: Angela has PML...
Posted: Thu Oct 21, 2010 12:36 pm
by Donnchadh
bretzke wrote:
Donnchadh wrote:
What is PML?
Donnchadh
Progressive multifocal leukoencephalopathy (PML), also known as progressive multifocal leukoencephalitis, is a rare and usually fatal viral disease that is characterized by progressive damage (-pathy) or inflammation of the white matter (leuko-) of the brain (-encephalo-) at multiple locations (multifocal).
It occurs almost exclusively in people with severe immune deficiency, such as transplant patients on immunosuppressive medications, patients receiving certain kinds of chemotherapy, patients receiving natalizumab (Tysabri)[1] for multiple sclerosis, psoriasis patients on long-term efalizumab (Raptiva)[2] or AIDS patients.
It is caused by a virus, the JC virus, which is normally present and kept under control by the immune system. Immunosuppressive drugs prevent the immune system from controlling the virus.
Oh, I understand now; I had never heard of it before. I sincerely hope she has a complete and quick recovery.
Dia linn, I never took any "MS" anti-immune drugs.
Donnchadh
Posted: Thu Oct 21, 2010 12:58 pm
by L
Terrible news. I feel awful for her.
Posted: Thu Oct 21, 2010 1:00 pm
by Cece
This is terrible news, I wish her the best to pull through this and work on recovery.
It was mentioned elsewhere that they've put a central catheter line into her neck, to do the plasma exchange to flush the Tysabri out. I can't even comment on the irony there. I hope she pulls through.
edited: it's the EV that's used. But still. I hate Tysabri yet I know there are people who have few other options
Posted: Thu Oct 21, 2010 2:44 pm
by Rose2
speechless. Cheer, thank you for writing on behalf of all of us. I appreciate it. I can't read the Italian, so not sure how she is feeling today? thanks, Rose2
Posted: Thu Oct 21, 2010 4:18 pm
by Cece
EJV / external jugular
Posted: Thu Oct 21, 2010 5:12 pm
by Trish317
Sending prayers to Angela and her family....
Posted: Thu Oct 21, 2010 8:02 pm
by Algis
Speechless too... We know it happen but when it is someone a bit closer.... Best of all and a prompt recovery for the always present Angela
Posted: Fri Oct 22, 2010 8:19 am
by LR1234
Hope Angela gets better soon. My prayers are with her and her family.