Life with MS

MS is a misunderstood disease. Each person affected by MS will confront very different issues. Promoting MS awareness, and helping people understand the challenges MS patients face, can be quite difficult because of the variety of both visible and invisible symptoms. Using technology can help because you can make connections not only in your community, but also throughout the world with just a few clicks on your device.
 
The web is not just for gathering information anymore. Having an active presence online is a must these days. There are so many MS organizations that have websites as well as social media accounts. By visiting an organization’s social media pages you can participate in the conversation.

Lifewire.com has published a list of The Top 25 Social Networking Sites People Are Using. You may already be using some of these, but, if you are not, joining is free and easy. To help you get started, most sites have helpful how-to guides. In addition, a search for the social media site of your choice on wikihow.com is a great way for beginners to get started.
 
It is important to remember that privacy is always an issue when posting on social media. Before you start, or even if you already use social media, a review of privacy issues is always a good idea. Privacy Rights Clearing House (www.privacyrights.org) is a great site to help you learn about important privacy
issues when using social media.
 
For the purposes of this article, social media pages will be divided into two categories. The first category will focus on pages that are primarily related to more personal connections. The pages listed in this section will address a wide variety topics that will help with everyday living with MS as well as personal connections that will help you feel empowered. The second category will highlight pages that are focused on current news relating to MS research.
 
There is quite a bit of overlap in these two categories, But many of the pages listed will take you in quite a few new directions. The best part of exploring social media pages is the discovery of new ideas and meeting new people. It is worth noting that the MS Coalition (www.ms-coalition.org or @MS_Coalition on Twitter and Facebook.com/MSCoalition) is a great place to start your journey. It is a collaborative network of independent organizations that encompass information to help you learn about and live with MS.
 
Making Connections:
 
MS Focus: The Multiple Sclerosis Foundation:
Twitter @MS_Focus
facebook.com/MultipleSclerosisFoundation

If you are reading this, you are probably already familiar with MS Focus and the many valuable resources they share. Both their Twitter and Facebook pages provide many ways to connect with other people with MS and to get information to make living with MS easier.
 
Can Do MS:
Twitter @CanDoMS
facebook.com/CanDoMultipleSclerosis
 
Standing up for your rights as an MS patient can be a very trying experience. Can Do MS offers a forum for information and support. It is very empowering to know you are not alone when dealing with issues such as the workplace environment or medical insurance.
 
MS International Federation:
Twitter @MSIntFederation
facebook.com/MSInternationalFederation
 
The MS International Federation is a unique global network of MS organizations, people affected by MS, volunteers and staff from around the world. It is made up of 49 MS organizations with links to many others. The About link on their website gives excellent information that fully explains their mission and tells you how to get involved.
 
Current Research News:
 
Accelerated Cure Project:
Twitter @AceleratedCure
facebook.com/AcceleratedCureProject
 
Some of the latest information from the February ACTRIMS (The Americas Committee for Treatment and Research in MS) in Orlando is available. Other organizations listed include iConquer MS, Genetech, and MS Discovery Forum. This Twitter feed draws a wide variety of participants that are working on a cure in various capacities.
 
iConquer MS:
Twitter @iConquerMS,
Facebook.com/iConquerMS
 
By participating and sharing your MS information you have a chance to be a part of the cure. For more information on how to participate, visit iconquerms.org/join. Data collected by iConquer MS is shared with MS research organizations to aid in finding a cure.
 
MSWorld:
Twitter @MSWorld_Inc
facebook.com/MSWorld.Fan.Page
 
This page has a wide variety of links on issues ranging from sleep to the gut biome and MS. As with so many other social media pages this page has new information every day.
 
It would be impossible to give a complete, current list of worthwhile pages. The strength of social media is that it is incredibly dynamic. With minimal effort, you can find information on just about any issue related to MS. In fact, once you begin your journey, you will realize that people with MS share many common values and problems with many others affected by chronic diseases.