Interesting things at ECTRIMS 2011

My photoshop of ECTRIMS.
Got Red?

So, while I was at ECTRIMS I have to tell you that everything was RED! The carpet the tables even the chairs... I have Optic Neuritis, so I have an issue with RED. Needless to say, I was tripping.... a lot. I did want to keep everyone up to date on some new and exciting tools that are out there that I learned about at ECTRIMS.

I visited the Genzyme booth where they were showing their resourceful tool called the MS Atrium. It's an exciting tool that is very interactive & helpful to anyone who wants to know more about MS. One thing I have to share about viewing the MS Atrium, is that they asked me for MY opinion. Let me tell you, I was happy to give it to them.

I've never had a MS pharma company ask me for my opinion on something so this meant so much. It made me feel that our voice does matter when it comes to tools and resources and even the pharma drugs. A lot of the people that I saw in each booth at ECTRIMS didn't know I had MS... so they were speaking to me in a "teaching" persona... when I already knew a lot of what they were saying.

I can't stress the importance of being knowledgable about all things MS, especially if you are diagnosed with MS. It's up to us to change the course of Multiple Sclerosis in the long run. By making our voices heard... it can make a difference, even if it's a small one. I did want everyone to check out the MS Atrium though, www.msatrium.com/

Let me know what you think about it. It's like a virtual world of all things MS. Also, what was your favorite thing covered at ECTRIMS? I've been responding to comments that I've seen in the Conference Center... but i'de like to hear more feedback from everyone. I have still been getting contacted about ECTRIMS from different companies... and I want to provide as much feedback as possible. Remember, every voice counts.

Urinary Incontinence Tool (ECTRIMS 2011)

So, while I was at ECTRIMS in Amsterdam. I asked a question to Allergan, Inc. about their Urinary Incontinence Tool. I have received an answer to my question and I would like to share this information with everyone. The question we asked was...: 

"Please tell us about the exciting new urinary incontinence screening tool that will be available to MS patients in the coming months."

The Answer we received from Manuel Signori, Sr. Director, Global Strategic Marketing, Urology.

"Many people with multiple sclerosis (MS) live for more than 4 years with bladder problems (incontinence) before having their first discussion with their physician about their condition. Often times, patients don¹t discuss their bladder issues with their doctor because they feel embarrassed or consider bladder issues something they just have to live with as a result of their MS.

The Actionable: MS Bladder Health Screening Tool was created by Allergan, Inc. to help the 60-80% of people living with MS who encounter bladder problems (incontinence). The Tool was developed to help patients understand when certain bladder symptoms warrant a discussion with their healthcare providers. It is the first MS expert approved, MS tool for urinary incontinence that takes both medical issues and quality of life (QOL) into account. It is not linked to any product or treatment.

It is our hope that The Actionable: MS Bladder Health Screening Tool will positively impact the patient/doctor conversation around bladder problems that put limits on social, professional and personal activities. These important conversations are the first steps in setting common expectations for the management and treatment of MS related bladder conditions."