MSAA Presents S.E.A.R.C.H.™ Live Webinar

msaa-search-graphicWhile having more than a dozen FDA-approved treatments for relapsing MS is very encouraging, learning about the therapies and knowing what questions to ask your doctor can be very challenging. Because of this, the Multiple Sclerosis Association of America (MSAA) created its S.E.A.R.C.H.™ initiative several years ago and recently updated the program with a new booklet, workbook and now an upcoming live webinar!

Designed as a memory aid, the S.E.A.R.C.H.™ acronym represents six key areas that should be considered when “searching” for the most appropriate MS treatment. We invite you to register for our free, live webinar, How to S.E.A.R.C.H.™ for the Right MS Therapy for You!, on Wednesday, October 19, 2016 at 8:00 pm Eastern.

In this live, one-hour webinar, MS expert Dr. Carrie Hersh will:

  • Review the current landscape of MS therapies and those on the horizon
  • Discuss the importance of having a good doctor-patient relationship
  • Explain the S.E.A.R.C.H.™ acronym and how it helps people remember the six key topics to discuss with their physician when deciding on a treatment
  • Provide effective strategies for staying on treatment

Following the presentation, participants can engage in a Q & A session with Dr. Hersh from questions submitted through the S.E.A.R.C.H.™ webinar’s live chat feature. For more information about the S.E.A.R.C.H.™ initiative, please visit our website.

This webinar, along with other recently updated S.E.A.R.C.H.™ materials, has been made possible with support from EMD Serono and Sanofi Genzyme. MSAA is solely responsible for the development of S.E.A.R.C.H.™ and its content.

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Things To Consider When Searching for the Right MS Treatment

There are many important factors to consider when having conversations with your doctor about your treatment options. The treatment decision for each person is unique and must be addressed individually between you and your healthcare team. Additionally, it’s important to recognize the need to prioritize your issues, questions, and concerns in order to maximize the time with your healthcare team. With so much information to remember, organize, and prioritize, MSAA recognized the need to help frame these important discussions. By doing so, MSAA is able to support patients and their physicians in their S.E.A.R.C.H.™ for the most appropriate therapy for each individual.

Designed as a memory aid, the S.E.A.R.C.H. acronym represents the key areas that should be considered when “searching” for the most appropriate MS treatment. Each letter represents an important topic that must be considered by patients, physicians, and other healthcare and social service professionals. S.E.A.R.C.H. stands for:

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MSAA has produced a variety of informational tools to help people maximize their success with S.E.A.R.C.H.™. Current S.E.A.R.C.H.™ tools available for download include:

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For more information about the S.E.A.R.C.H. program and to receive any of these resource items, please visit the S.E.A.R.C.H. for Treatment Options page on our website.

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Why I Choose to Medicate for my Multiple Sclerosis

I know that there are a lot of people with Relapsing forms of MS who wonder why we are encouraged to medicate. Especially, when these medications do not ‘stop’ progression, but have only shown to slow progression. It’s a big decision to make when choosing to medicate, if you do plan to do so.

I can honestly say that looking at the ‘world of MS’ from 20 years ago to now, it seems that disability rates have improved, along with patients Quality of Life.

I know that a lot of the MS medications available have side effects that are associated with the treatment, but the way I look at it is, at least we have options. We aren’t without medications to help slow our progression anymore. We also don’t have to all take ONE certain medication either.

I haven’t been one of those patients with MS, who gets on and stays on the first medication that I chose. Not one medication works for everyone living with MS. I have changed medications multiple times since my diagnosis, not because I ‘wanted’ to, but because I needed to.

So, the question people ask me a lot is, “Why do you choose to medicate, if you have failed multiple treatment options?” This isn’t an easy question to answer by any means. For one, I’m scared. I’m scared of the unknown… I’m scared to know what would happen if I didn’t medicate. Even though these medications don’t promise to STOP progression, they have shown to slow it… and I really don’t want to know what my life would be like if these medications weren’t slowing at least some of my progression.

Another response I have is, why not? What do I have to lose? Before I actually got diagnosed I was miserable and could barely function, and ended up being in a wheelchair. (I am no longer in a wheelchair, by the way.) I’ve already been at my lowest and it’s not somewhere I want to go again.

Whenever you read anything about multiple sclerosis, it states that it is a progressive illness. I don’t want to take my chances to see just how ‘progressive’ my disease can be.

So, as long as there are options available for me try, I will. I know that having flu-like symptoms with an interferon, or GI issues with Tecfidera aren’t pleasant, but the truth is, it could be a lot worse if we don’t deal with those side effects and get on a treatment.

Now I’m not just saying I play ‘eenie-meenie-minie-mo’ to choose a medication – this takes a lot of research and discussing these options with my neurologist and family. Something I use when wanting to compare the medications is MSAA’s S.E.A.R.C.H. Program. There are many resources available to those with MS when trying to decide which medication to take, so make use of them.

The medications available to MS patients have been increasing since I was diagnosed in 2010. Try to stay informed and educate yourself about what’s going on with MS Clinical Research. This way you know if a new medication for MS is on the horizon.

MSAA even has a Research Update publication that you can check out to learn more. As most of you know, I’m a volunteer for MSWorld.org, and we attend Multiple Sclerosis Conferences, helping to keep everyone at home up-to-date on all things MS. You can view all of MSWorld’s Conference Coverage at the Conference Center or YouTube Channel.

Best Wishes!

Ashley Ringstaff – Volunteer for MSWorld.org

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Self-Advocacy for People with Multiple Sclerosis

Different thoughts may come to mind when you hear the word ‘advocacy.’ Some may not be familiar with the term or others may have a very vivid description of what the word means to them. Advocacy can be defined as active support, pleading or arguing in favor of something or for some type of cause. Individuals advocate for themselves in different ways, sometimes without the knowledge that they’re engaging in self-advocacy. When you visit your doctor and ask questions, this is a form of self-advocacy. You are supporting your healthcare by requesting more information to make the best informed decisions you can regarding your care. Some individuals have others assist them with this task at times; family members, friends and caregivers have been known to advocate for care when involved in the healthcare process. Sometimes it’s helpful to have another voice or set of ears advocating for your health needs when interacting with your medical team, and there can be different forms of this advocacy presented.

Here are some ways the MSAA can help you remain an advocate in your healthcare:

  • My MS Manager™:  a mobile-phone application to track disease activity, store         medical information, generate reports, and assist individuals with their treatment      plan
  • MSAA’s S.E.A.R.C.H.™ Program:  tools to help individuals with learning about the approved long-term treatments for MS, along with questions to discuss with the patient’s medical team
  • My MS Resource Locator: an MS-specific, online database offering targeted information and unique support services, including detailed guides

What are some ways you advocate for your care?

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