Girl with MS Support Group & BelongMS are here to help!

Help!   I definitely need extra support during these epic times.  How about you?  


As many of you know, my focus is Conquering MS with Self-Care.  Self-Care means a lot to different people but for me it represents a combination of awareness, education, action, and medical expertise.  As people living with MS, the need for social connection is essential in keeping us sane. At least it is for me!  


One of my most asked questions is “Do you use an app or other social media to help with your MS?” And the answer is Yes. 

I’ve used and tried different apps and social media outlets over the years and each has slightly different offerings and options.  After being shut down by facebook due to a hacker, (My story here) I knew I needed something more reliable.  

For my current life with MS, I have chosen BelongMS (part of Belong.life) to share my twenty years of experience to help others.   

We created a Girl with MS support group.  And it’s not just for girls. As a certified life  coach, nutritional educator, health journalist and someone living with MS for twenty years, we have stuff to talk about!  There are many tips and tricks and just over all support that will help us live better with MS. Will help us all say, #takeTHATms!  

  


And now we can chat directly via Belong.  Anyone with MS can join Belong and find tons of support, friendship, expert advise and even clinical trials. Once the Belong app is downloaded and you have registered (click here for app), then you can scroll down and see the different support groups.  Mine is circled below and is the Girl with MS.  Join me!  




The Girl with MS Channel is all about Self-Care.  We’ll talk about different ways to take care of ourselves, ways to find ourselves and ways to support each other.  



Because if I don't take care of myself, this is how I end up feeling:  

  

But when I do take those extra steps, those extra little measures to take care of myself like medical visits, and extra caution,



I can have days like this: 



I’m looking forward to “seeing” you on Belong and having a channel to talk directly with all of my MS friends out there.  If you already have Belong App, then look me up and let’s chat!   


MS is a challenge but together we’re stronger.  Together we can support ourselves with questions, answers, encouragement and laughter.  Together we can BELONG!    


And together we can say #takeTHATms! 



Watcher: Mystery, Murder, Mayhem and a Lady with MS

Finally!  

A FUN read featuring a lady living with MS but not focusing on her MS. Watcher, by Jason Stokes, is a tried and true murder mystery and it just happens that the leading lady has MS.  And those with it will relate as she struggles obstacles with adrenaline us MS warriors know about.  The kind that you dig up from the bottom of your well when your well is empty. The kind that comes from survival, from necessity.  

The story flows freely and frantic enough to keep the adrenaline going and the intrigue in motion. Thoroughly enjoyable and well done, I thought the author had MS because Jason Stokes nails it on what it’s like living with MS, or at least for me.  So many times I thought, “I know that feeling,” only to be swept up by the story and taken off to some ledge to hang on til I turned the page.  Not sure I’ve read that quickly in a long time! 

Any way, I had to share with you all. Need a distraction?  Try Watcher by Jason Stokes.   This Girl with MS sure enjoyed it!     

Click here to purchase

*My opinions and this is not my affiliate link - proceeds go to author* 

Taken directly from Gestalt Publishing:     


What she saw may cost her life.

Teri is a watcher. A silent witness to the lives of others. Robbed of her strength and mobility by a devastating disease, when she witnesses a crime so vicious it forces her to choose between her own safety and a woman she's never met, she'll have to untangle a web of corruption, clear her name and catch a killer before she's the next to disappear.

 

     Watcher was written as a love letter to the MS community and everyone struggling with chronic debilitating disease. A message on every page that though disability can steal your strength, rob you of your physical assets and change how the world chooses to perceive you, you are still strong. You accomplish more before getting out of bed than most people manage all day and that deserves to be celebrated.

    Teri is flawed but she is human, like the rest of us and she is empowered with the indomitable gift of an unbreakable spirit.

What's all the buzz about Kesimpta® - the newest FDA approved Drug for Relapsing forms of MS?

OK guys, KUDOS to all those doing incredible research and clinical trials for us living with MS!

Especially during this time of Covid-19, it's nice to hear of the continuous progress being made.  As someone living with MS for twenty years now, I am always interested in learning about new therapies and how research and approaches have changed over the years.   

Today we have ofatumumab, brand name Kesimpta®, the newest disease modifying therapy approved by the FDA for relapsing forms of MS. Kesimpta® is produced by Novartis.  When I heard this, I wanted to learn more!

I’ve been compensated by Novartis in the past but the opinions expressed here are my own

(These thoughts are my own - I am not being compensated for this post.)

Kesimpta® is a disease modifying therapy that targets B-cells in the body to help the immune system manage itself better and help with inflammation.  In doing so the rate of relapses and disease progression can be reduced helping people with MS live a fuller life.  Or at least this is what the research is showing.  I recently wrote about Kesimpta® for Healthline.com and contains a lot more information.   

Just released, Kesimpta® is already being prescribed and used. This Girl with MS is darn excited to hear how folks are liking it!  You can check out their information and patient support at kesimpta.com.  

I sat down the other day and got to interview two interesting folks. One a doctor and one living with MS.  


Kerry, 38: Kerry was diagnosed with relapsing remitting multiple sclerosis (RRMS) in 2012 after experiencing a loss of sensation in half of her face for nearly two weeks. Today, she leads a busy life day-to-day as an advertising executive and mother of two young boys. Kerry’s husband is a key point of support at home when MS symptoms may tire her out. Kerry has never taken and is not currently taking Kesimpta. Of note, Kerry currently works for an advertising agency that services Novartis, but is not being paid for this opportunity.

 

Dr. Robert Shin, Neurologist: Dr. Shin is a Professor of Neurology at Georgetown University in Washington, D.C. and the Director of the Georgetown Multiple Sclerosis and Neuroimmunology Center. Dr. Shin specializes in multiple sclerosis and neuro-ophthalmology. Dr. Shin is a paid spokesperson for Novartis.


I recently wrote about Kesimpta® for Healthline.com.  Click here for full article. Some excerpts below: 

“This data is very promising and very positive,” Bruce Bebo, PhD, the executive vice president of research at the National Multiple Sclerosis Society, told Healthline last week. “We are excited about this option.”

More than 900 people received ofatumumab in the multi-center clinical trial this summer.

In study results published earlier this month, the immune-modulating drug was shown to quiet inflammatory disease activity. 

Researchers said a subcutaneous injection of ofatumumab produced a significant reduction in new inflammation as well as fewer clinical relapses and progression events. 

In the second year of treatment, nearly 9 out of 10 study participants on ofatumumab showed no sign of disease activity.

The study covered two double-blind, double-dummy phase 3 trials, ASCLEPIOS I and ASCLEPIOS II. Both were funded by Novartis.

The trials were conducted at 385 sites in 37 countries, comparing ofatumumab with teriflunomide, currently marketed in the United States as Aubagio, by Sanofi Genzyme.

Ofatumumab is similar in action to ocrelizumab, marketed in the United States as Ocrevus by Genentech.

These two drugs were not compared against each other, but the mechanics are the same as they target B cells in an effort to manage the immune system. 

“The clinical data is similar between the two, but the route of administration is different,” said Bebo.

  I recently wrote about Kesimpta® for Healthline.com. Click here for full article.

You can check out their information and patient support at kesimpta.com.  

(These thoughts are my own - I am not being compensated for this post.)


Just earlier this year we had the FDA approval of Zeposia® (ozanimod), produced by Bristol Myers Squibb.  Click to read my post about it.