Thoughts and prayers go out to those who continue to suffer with progressive multifocal leukoencephalopathy (PML), a deadly brain infection, due to their Tysabri infusions.
Let's all keep Angela Cleary, our brave and beautiful friend, in our hearts. Before being infected with PML, Angela was our very active translator of Italian press and research. She was born in Italy, but fell in love with an American man, and made the US her home. She has met Dr. Zamboni and was fund-raising for CCSVI before she became ill with a PML infection-
Here is her Facebook page
and her website:
Here is a recent post from her husband, Keith....
Angela has not been feeling up to spending much time on the computer, so she checks the comments on her FB page, but doesn’t really feel well enough to write back too often. Physically, she had been improving a little more each day. Unfortunately, she had a minor setback this morning. She woke up at 6:15 this morning and had a seizure. She then proceeded to have 9 seizures in the morning (7 at home, 1 in the ambulance and 1 at the hospital). Luckily, none of the seizures were too severe, however it has weakened her left arm and left leg once again, so she will have to continue her rehab just to get back to where she was yesterday. This was the first seizures she has experienced since the two she had on March 28th. She is home now and they have increased her medications to control the seizures. Hopefully, that will prevent this from happening again. She feels really guilty that she cannot converse or write back to all of you as often as she would like, but please know she appreciates all of your support.
Let's also keep Natalie Murphy in our thoughts and prayers. She was a pharmacologist before contracting PML, becoming paraplegic and losing the ability to speak. Her brave husband, Declan Walsh, stood up before Elan management last week, and asked the drug company to "make all resources" available to take care of his wife.
She's in a paraplegic state in Sligo general hospital and is unable to speak after she contracted PML in 2009 having been using Tysabri since about 2006. She's the only known Tysabri user in Ireland or the UK to have contracted the disease. PML is a known, but very rare potential risk factor associated with Tysabri. Only 124 PML cases have so far been identified among Tysabri users, while 23 of those patients have died.
Close to 60,000 people around the world are currently using Tysabri. Elan is currently rolling out a new blood test, so Tysabri patients can better weigh up the risks of taking the drug if they carry specific antibodies. Speaking to the Irish Independent following the AGM, Mr Walsh -- who established the Deferno Trust (defernotrust.org) -- said he welcomed the assurances from CEO Kelly Martin and chairman Bob Ingram that they'll follow through on his proposals.
These include the establishment of a PhD research programme into Tysabri-related PML, and the appointment of a specific patient liaison officer.
Mr. Walsh's wife is a pharmacologist and at one time she worked as a product manager with drug giant GlaxoSmithKline-- the company where Mr. Ingram was once vice-chairman of pharmaceuticals.
He added that Elan had failed to effectively engage with him last year when he first raised the issue of his wife's condition, which he estimates results in medical costs of about €600,000 per annum for the health service.
"There was absolutely zero interaction between Elan and ourselves. The only interaction was when she was initially diagnosed," said Mr Walsh. "I had to come here to try and make a point. My beautiful wife is dying. From the outset, I've made it quite clear I'm not interested in any legal suit."
http://www.independent.ie/business/grav ... 59525.html
THESE TWO WOMEN are connected by the Deferno Trust---
The Deferno Trust exists to provide support, to gather and share information on the Tysabri related PML illness. The Deferno Trust aims to connect PML sufferers, their families and friends and everyone that has been touched by Tysabri related PML. We will gather and provide facts and information for Multiple Sclerosis sufferers and their families so they are fully informed about Tysabri related PML.
Our mission is to gather data consistently on MS patients that have contracted PML through use of the drug Tysabri (natalizumab) and ensure MS sufferers are aware of the growing number of PML patient cases worldwide.
“What will be challenging is the 55% of people who will still have positive results, and what to tell them. Their risk of PML is four times higher than we thought it was, though still small: one in a few hundred instead of 1 in 1,000.”
Michelle Cameron, M.D., is a neurologist at Oregon Health and Science University, Portland. She has financial associations with Biogen Idec, Innovative Neurotronics, Teva Neuroscience, DJO Global, Mettler Electronics, and California Education Connection.
I just wanted to give you an update on how I am doing. I made this video in Oklahoma during my trip to Texas and Oklahoma. This was my first trip since being diagnosed with PML in October 2010.
Sorry for the windy background noise.
Also, please understand if I am not able to reply to every comment.
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