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Multiple Sclerosis by the Numbers [INFOGRAPHIC]

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How much do you know about MS? Who gets it? What symptoms do they experience? Are there different types of MS? What’s the average age at which people are diagnosed? Test your knowledge on facts and figures about the disease with this infographic.

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It’s a New Year: What’s Next for Multiple Sclerosis Research?
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One year closes, another one begins – and it could well shape up to be another exciting year for multiple sclerosis research if 2014 was anything to go by! Here are some of the hot topics that we think could be worth keeping an eye on this year and beyond…

Genetics

Since the 2003 human genome project gave us the first full map of our genetic code, scientists have been looking for clues in our genes as to why some people get a disease and others don’t. The International MS Genetic Consortium and others are continuing this pursuit and recently showed an early version of their multiple sclerosis genomic map, which will be published in full in 2015. This will enable future research to follow the progression of the disease in people with different genomic variations and monitor how different drugs can be used, or what preventative measures can make a difference – as we get closer to truly personalised medicine.

Remyelination

A number of research groups are looking at this intriguing space – and exploring whether it’s possible to help the brain to put myelin back in place following an inflammatory episode. Interestingly, it seems that certain cells can be “switched on” to help the process. Although very exciting, research here is still in its very preliminary stages and this is certainly an area that needs a lot more research.

Stem cells

You will probably have heard a lot about stem cells, but did you know there is a very active pool of researchers looking at how stem cells might be able to be used in MS? These include trying to find out how they could communicate with the immune system. 2014 also saw early stage clinical trials in humans using a special type of stem cells known as mesenchymal stem cells, which could lead to further clinical investigations in the years to come – a big step forward.

Bacteria

A lot has been made of the difference between “good bacteria,” such as those in your probiotic yogurt, and the “bad bacteria” that can lead to super-bug infections. Recent research has suggested an even more important role for our friendly bacteria; they may help the blood–brain barrier (which, amongst other things, protects the brain from foreign entities in the blood) function properly.

One of the suggestions from researchers in this area is that variation in the levels and type of these bacterial helpers might shed some light on the initial inflammation commonly associated with the start of multiple sclerosis – an important line of research to pursue.

New drug targets

The study of genetics has helped us to understand a lot about the similarities and differences between MS and other diseases at a genetic level. This in turn has helped to assess whether a drug for one disease might also have a positive effect in multiple sclerosis. This helps both, when looking back at therapies currently available (but licensed for other diseases), but also when looking forward at new drugs still in development.

Such “network analysis” requires a lot of computing power and associations need to be carefully assessed, but the prospects here are great and is certainly a space to watch over the next few years.

Imaging

MRI (or magnetic resonance imaging) technology is marching forward a-pace too. There are a number of different types of MRI, starting with the actual machines. There are different sized magnetic fields available, with a higher number of ‘Teslas’ increasing the level of detail achieved. There are also numerous image processing algorithms that can really make full use of the information captured by the instruments.

This is clearly a super complex area, and as a result, a great deal of research is looking at how best to use this fantastic technology to see the specifics of MS up close. For example, some research groups are looking at how best to image spinal cord lesions, and others are looking at how to combine MRI with another type of brain imaging called PET (positron emission tomography) to yield even greater detail around the progress of the disease.

These are just a few of the many different avenues of research being explored. It’s an exciting time in multiple sclerosis research. Who knows exactly what the future holds!

What’s Next in Multiple Sclerosis Research? – Living Like You

Freelancing 101: 5 Tips for Channeling Your Inner Entrepreneur
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In case you haven’t noticed, the traditional workplace is changing. In fact, a computer and a working Internet connection are basically all you need for an office nowadays, which is great news for anyone seeking remote flexibility in their career. Thinking about making the leap to freelancing? Here are a few tips to develop that entrepreneurial mindset.

Ready to hustle?

First and foremost, we need to warn you: freelancing is not a quick and easy career fix. Anyone who has started their own businesscan tell you that there will be plenty of difficult moments—but being independently successful is the greatest reward.

Find your niche.

Make a living out of what you’re good at. Make a life out of what you love. Remember this as you’re considering what it is you want to do, and focus on your unique qualities and capabilities. If you’re already working in a field that’s conducive to freelancing, why not continue it? Keep stock of the professional relationships that are valuable to you, including past and present clients who enjoy your work. You’ll want to reach out to them later.

If you’re new to freelancing or would like to try something different, check sites like Elance, which posts jobs for everything from writing and design, to data science, customer service, translation and more. Most importantly, no job is too small—building your resume takes time, and experience can come from anywhere.

Get noticed.

This is our favourite part—establishing your online presence. Should a prospective client decide to do a little digging to find out more about you and your work, why not point them to a place you’ve curated yourself? Gather your resume and a few examples of your best work and use them to build your web portfolio. Tools like Squarespace and Moonfruit are easy to use and will help you build a published website step-by-step.

A word of career (and general life) advice: look over your public social media accounts and double-check for anything that might be offensive or you wouldn’t want a complete stranger to see. One Tweet or Instagram post can cost you a job.

Determine a schedule.

Your time is valuable. You may not work a consistent 9-5 schedule, but it’s important to create a strong work/life balance. In the words of author and designer James Victore, “Make a decision that your time outside of work is valuable and feel empowered when you leave on time, knowing that you are taking your freedom and using it to invest in yourself.”

Get paid.

Know your worth. Do a little research to help you determine what your rates should be and whether you’ll charge by hour or by project. You don’t need to disclose this in your portfolio, but it does help to guide the conversation when it gets down to brass tacks.

Once you have a firm idea of your rate, start creating templates like price sheets, contracts, project outlines and invoices to use on a regular basis. Not only will it keep you looking professional, but it’ll help streamline the process and keep your PayPal account growing.

Multiple Sclerosis and Freelancing – Living Like You

Still Working – How I'm Coping Back at Work with My MS
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by Jamie Tripp Utitus in Work
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Wow, I think my “back to work after five years” article is becoming more like a column. I have a follow up to share. It has been a little over a month since I have begun to teach again. In addition to writing and teaching I MUST remember that I am also a wifeand a mum, a sister, a daughter, a friend etc., and lest we forget, a person living with MS. Coming back to a place of work has reminded me of two things.

1. Life itself is a job. Who is minding my life while I am here minding other people’s children?

2. People. I must re-learn to socialize and work with people.

My work life, since multiple sclerosis overtook my body, has been defined by little old me, in a ‘lil old house office, plucking away at a little old keyboard, alone. Sure I have interacted with people all over the world, but it is different through the lens of a monitor and a keyboard where I can censor what I say and, more importantly, erase the mistakes. Here I can step on toes, have disagreements and can’t simply hit the backspace key and delete.

But what I need now that I’m back to work is a lot more patience and love.

There’s a prudent place in my heart that is reluctantly telling me what the first month has been like, because I don’t want to scare anyone out of going back to work, outside the home. Don’t get me wrong, there are perks like steady paychecks. I am grateful for that check. I get to shower in the morning without someone opening the shower curtain because I am up and out while everyone is asleep.

But, there is this one minor detail that has thrown me off for the past month. I have multiple sclerosis and what others find to be simple tasks, simply aren’t SIMPLE to me. My body has been feeling it, screaming at me, kind of like a teen at their mom or dad. Why do I have to go? I love to come to work in a building with others, but my body does not.

I was trying to think of the one, most significant thing I have learned since returning to teaching. And this is it, but it is fastened to disclosure. So you really need to be a person who has disclosed their illness to understand the lesson I am sharing with you.

The greatest lesson I have learned is to speak, knowing your limitations. I tell my fellow teachers and bosses ahead of time of potential problems, or things that worry me like field trips, or going outside for gym class where the teachers participate in the class with the students.

Stay tuned for next month’s update…we all know, by definition of our disease…these things can change in a blink of an eye!


*Living Like You bloggers are financially compensated at a reasonable market rate for their time. Payments to bloggers in no way influences their writing, opinions or perspectives on life with multiple sclerosis.

Going Back to Work After Multiple Sclerosis Diagnosis – Living with MS


Clever Ways to Disclose Your Multiple Sclerosis in the Workplace
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As Britney Spears once wisely spouted, “You want a hot body? You want a Bugatti? You want a Maserati? You better WORK B…!”

Work is a struggle for us all, even Britney. Outside factors, including family, friends, and our health affect our day-to-day functionality. This impact is exaggerated in the workplace, where we exert ourselves mentally (and/or physically). Those living with multiple sclerosis have an especially difficult time, as many of the symptoms are not visible to others. Exposing our wellbeing is not easy, particularly when we’ve been programmed to maintain a crisp professional veneer and push through our pain, even when we’re feeling horrible. So, what are those of us, not independently wealthy, to do in order to maintain our livelihoods? Marry rich, or…

Take time to self-evaluate. When it comes to invisible symptoms, gauge your levels of cognition, vision, bladder and bowel changes, and plain old pain and fatigue. What is worth disclosing to coworkers, and what is not?

If you’re able to get through the day without much trouble, and thus, don’t need your employer to make any special accommodations, you may decide to keep your health to yourself depending on your office’s culture. If you work in an every man/woman for themselves environment that values short-term output, discussing your health may cause higher ups to treat you differently with regard to promotional opportunities and career growth. They may excuse your career stagnation with poor performance when, in fact, they don’t want to spend time and money training someone who may not be able to work as quickly as desired or may require employer accommodations in the future due to illness. Of course, this is illegal in most countries and you should know your rights!

Still, many companies operate ethically, and even if they don’t, it may be worth sharing your condition if it is indeed impacting your performance. A manager may think you’re simply lazy when you’re actually fatigued, experiencing cog-fog, or distracted by pain. In these cases, it is important to be very straightforward about your circumstances. As mentioned, most suffering from MS appear perfectly fine, so some may think you’re making excuses, as they don’t see any visible symptoms.

What about the MS symptoms you’re too ashamed to speak of? Let’s all say it together…one…two…three…BOWEL. You’re constantly getting up and using the restroom, and you know your coworkers notice, yet you’re too embarrassed to raise the topic. In these cases, there is no need to be literal. Simply say, “I know it looks odd that I’m always getting up and using the restroom. It’s one of the side effects of my MS…yes, I have MS.” Be prepared from some of the crazy sh*t people say about MS, but have no fear – some people may surprise you with their compassion and understanding.

Clever Ways to Disclose Your Multiple Sclerosis in the Workplace – Living Like You
 
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