PML Progressive Multifocal Leukoencephalopathy

PLEASE HELP NO MATTER HOW SMALL
(it is TAX detuctable)
This is a personal video of what this disease is about and where to fund it.

NORD
55 Kenosia Ave.
P.O. Box 1968
Danbury, CT 06813-1968

All checks should have
"for restricted research for PML" written on the memo line. When sending a donation, please provide your
name and address
so NORD can return an acknowledgment for tax deduction purposes.

For more details about NORD,
please go to:
http://www.rarediseases.org

Or to learn about THIS disease go to:
http://www.ninds.nih.gov/disorders/pml/pml.htm

There is also a Site you can go to to talk to people that have PML OR are care givers of people with PML who are unable to get on a computer to write:

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

I was one of these people at one time when I was bed ridder for THREE months and given 2 weeks to live.
I lost the use of my right arm and hands, the use of my right leg, I could not walk without falling down and hardly talk.
It has mostly all come back.
I am not 100% but I would say about 95%.

PLEASE those of you that are care givers and family members. LOVE AND SUPPORT are the ONLY things that can help right now, unless research finds a treatment or a CURE!

Category:

Education

Tags:

• Progressive
• Multifocal
• Leukoencephalopathy
• PML

[PMLdisease]

galuemaumaga I am so sorry to hear that. I will write you privatly. So look for a PM sent to you on here.

[screenkiss007]

have just come back from UCSF doc there wants to give me the bigT I have crohns had useless chemo..6MP remicade! and all have given me everything from CHF to snapped achilles to that dam rash you just cant seem to live with.I had devastating news, options are running out I am interested in info on doc you are brave THANK YOU information is power what is black boxed today because of death yesterday indecision tomorrow, keep sending the word it doesn't matter about statistics it could be you

[PMLdisease]

screenkiss007 Thank you. I am sorry you are going through this hard time.

Stay in touch and tell me how you are doing.

Bobby

[ojosquelloran]

My heart and prayers for you and those who suffer this devastating illness, we can all do so much, I'm talking to all my friends about your video and sending them your link and also the info so we can contribute to it's research. Thank you for being so strong, I'm going through some pretty scary times myself but nothing compare to this. You are an inspiration, Thank you!

Ollantay

[PMLdisease]

Ollantay ,

Thank you very much. And I hope you get through your scary time. All I really want is to get people aware of this to avoid it happening to them.

Take care.

Bobby

[chrcoll]

Thank you for your bravery and strength.

I have been diagnosed and treated with PML about 6 months ago and not sure how long it was inside me before the diagnosis.

There is so little help ,and support out there and it is so refreshing to hear about your success.

I need support and help as my life has fallen apart in a million pieces.

I will be in touch!!

[PMLdisease]

chrcoll,

Thank you and please do get in touch with me. I would love to talk to you and help any way I can.

[Sumpfhexchen]

Was tested positive on JC-Virus after three years Tysabri

GREAT...

Waiting and hoping the best?

[Banjibwoi]

My Partner of seven years is now bed ridden and hanging in there...at this time he can't talk, barely opens his eyes and has lost use of his entire right side of his body. Im hoping he will be one of the survivors but i'm so scared for him..this must be so hard on him. Do you remember anything about the time you were bed ridden?

[fluflufox]

thankyou for your story so very much

[ReiReBo]

@PMLdisease

i ran into this browing around on the internet.. it does not sound fun. sounds horrible

but this man in the video.. you have a strong heart. the heart of a thousand and 1 bulls!

just thought id say that

good luck to anyone and everyone!

[chalinosnchz]

@rod4cock

Where do they offer that treatment?????????

[rod4cock]

@chalinosnchz now cure is available for PML. a new antimalarial drug morphiquinine has been invented. it cures .

[PrincessPignatelli]

@Nikifuj908 @Nikifuj908

As things stand today, the chance is 1.16 in 1000 of getting PML from Tysabri.

the total number of cases of PML in patients taking Tysabri is 95. The total number of deaths is 20. These are figures from Biogen Idec, the manufacturers.

To anyone out there with MS, I would say check out overcomingmultiplesclerosis

Professor jelinek certainly saved my life.

[gekiryudojo]

This poor sole is now dead :(

[chalinosnchz]

@rod4cock

Hello i am a Medical Case Manager on HIV/AIDS patients and i have a patient w/ PML. He was diagnosed HIV positive about 3 months ago and started to have PML symptoms. I have seen him drastically deteriorate in a 3 month period. As of now he is attached to a ventilator and was struggling through a Pneumonia. I've researched and saw the possibilities to survive which are 50/50 on HIV patients. This gives me hope to share to my patient's parents, God Bless You much!!!!!!!!!!!!!!!