My Tysabri Diary...Patient Advocacy

Many of you might be wondering why I am posting a blog entry like this ... well, I was visiting a MS blog where a young girl was spouting false information regarding Tysabri. So when I attempted to nicely enlightened her, she copped a major attitude with me and it became clear that her intentions were to seek sympathy and cause confusion among the other MS patients. Well that didn't sit to well with me, and I pretty much blasted her in a private message, so as not to embarrass her further in public (as she was doing a pretty good job of embarrassing herself due to her ignorance) - LOL

As a MS patient for over 31 years, current Tysabri patient, and active member of the MS community that encourages patients to be their own advocates, anyone reading my blog should be aware that I am only one of many who are extremely tired of Tysabri being unfairly maligned by these largely avoidable drug interactions; Tysabri's RiskMap/TOUCH protocol mitigates the 0.1% risk almost completely. And we do understand that no drug is without risk, not even aspirin.

Furthermore, we are aware of the very significant fact that Tysabri alone quite clearly did NOT present any extraordinary risk. It was the combination of Tysabri and other immune modulators and other immunosuppressant drugs that created the risk that caused Tysabri to be voluntarily withdrawn from the market for 15 months.

Many MS patients become disabled to the point that they cannot work and/or experience a very poor quality of life due to increasing and accumulating disabilities. Our patient population also has a very high suicide rate due to no hope left for many to hold on to, despite family and professional support.

Having Tysabri unfairly labeled as a risky or "killer" drug by many in the media, and by arrogant, ignorant patients and professionals, discourages many naive patients and neurologists from fully considering Tysabri's use, which in turn deprives those patients and their families from its benefits that could accrue if the true and full facts were represented.

A large majority of MS patients are quite well-versed in Tysabri, and they view false media reports and false/ignorant patient information as biased and nothing more than "throwing the baby out with the bathwater."

Whether or not you are a Tysabri proponent for it's use a DMD therapy for treating Multiple Sclerosis, one must realize that false information only leads to uninformed MS patients suffering new and further (and quite possibly permanent) disabilities, many of which could have clearly been avoided with Tysabri's superior efficacy of 67%.

It's our treatment choice, and it's your choice as well to state the true and accurate facts regarding Tysabri.

(((hugs)))
Love, Lauren
A very proud member of www.MSpatientsforchoice.org