In 1993 at the age of 6, my life changed in many ways. I was diagnosed with Myasthenia Gravis: a rare chronic autoimmune disease that causes abnormal weakness of all voluntary muscles. It is caused by a breakdown in communication between nerves and muscles. Treatment is used to maintain and subdue symptoms, but there is no cure for this disease. We didn’t know much about this disease but my mother made sure I had what I needed and lived a normal childhood. As I got older, the disease grew with me but I still continued on with my daily life. I participated in school activities, I played with my friends, and everything else you can think of children doing I did. Entering into my adult life was no different. I LIVED! I attended college and graduated, I travel when I find time to do it, and my most important and accomplished job being a parent.
After 22 years, in 2015, of being crisis free, I had my very first one. The experience kicked off some major life reflections with this disease and what it does to patients like myself. From that year to 2017, I was hospitalized 5 times because of it and I was determined to get back to the old me. I had a conversation with an emergency room nurse and she told me in all the years she’s been a nurse, over 25 years, I was her second patient that had Myasthenia Gravis. I was extremely shocked when she said that. As we got deeper into our talk, that got me to thinking “what can I do to change this and bring this to light?” I had noticed my area St. Louis, MO didn’t have anything established concerning Myasthenia Gravis so I decided to take on this job and create My Walk with MG. I want to service my area and surrounding areas with as much knowledge as I can on the foundation of my life. I have lived with this disease over 26 years, so I know with my walk I can help encourage others.
With the help of my Myasthenia Gravis community, family, and friends, I will make sure that My Walk with MG brings awareness to the world!

I recently did my second podcast with PodcastDX and like the first time we had a great chat! The segment was to catch up in the middle of Covid and having Myasthenia Gravis and to see what's changed.

Check out the link...it's about 25mins!!

Thank you all again for having me on the show!!!

Let me know what you think of the interview and PLEASE be sure to check out their website and other interviews!!
#MWWMG #STL #MYASTHENIAGRAVIS #MGAWARNESS

“MG has no boundaries, so why should I? Why should I limit myself when the disease doesn’t have a limit. That’s not fair. That is not a fair fight if I let up. So I will continue to push the boundaries of every second of every day, knowing by doing that, I will always come out ahead. - @deanna_steinle ”

@deanna_steinle IS ABSOLUTELY CORRECT!! WE SHOULDN'T LIMIT OURSELVES AT ALL!! STAND TALK, FACE IT HEAD ON, AND WATCH HOW LIFE UNFOLDS FOR YOU!! WE ONLY GET ONE AND YOU BEST BELIEVE WE'RE GOING TO LIVE IT!!
#MWWMG #STL #MYASTHENIAGRAVIS #MGAWARENESS #30FACESOFMG

MY LITTLE FASHIONISTA CHARM!!!

DIAGNOSED AT AGE 3, SHE HAS YET TO LET #MYASTHENIAGRAVIS SLOW HER DOWN. IF YOU KNOW HER LIKE I DO SHE IS FULL OF LIFE!!!

"Hey I’m Charmy and MG will not defeat me!!!!"
#MWWMG #STL #MGAWARENESS #30FACESOFMG

I TOLD YOU THERE'S SO MUCH TALENT WITH OUR #MYASTHENIAGRAVIS COMMUNITY!! CHECK THIS OUT 😊

WITH THE CLIMATE OF TODAY AND THE MOVE TO HOME SCHOOLING, THIS COMES AT THE PERFECT TIME!"

OUR #MG SISTER APRIL WYNN HAS CREATED AN EDUCATIONAL PLATFORM FOR OUR BABIES! WITH HER BACKGROUND IN EDUCATION, SHE AND HER TEAM COLLECTIVELY CREATED AN AFFORDABLE WAY TO EDUCATE OUR CHILDREN AT HOME. PLEASE LIKE HER PAGE AND SUPPORT HER HELPING OUR BABIES!!

"Hi! Here at The Cherokee Rose Educational Publishing we are excited to launch our new website. This website will offer free articles and information but it is intended as a vehicle to sell our self-designed products and curriculum. We put a lot of time and effort into our creations and offer them at the lowest possible prices. We are concentrating on Preschool through 3rd grade for the first few months." April Wynn

HOW COOL TO WAKE UP TO THIS ON IG!! 😊
THANK YOU WEGO Health FOR THE TAG AND MENTION OF MY QUOTE ON INSTAGRAM 😊
#MWWMG #STL #MYASTHENIAGRAVIS #MGAWARENESS #WEGOHEALTH

GO FOLLOW US!!

GOOD MORNING!!!

LET'S SEND THIS BEAUTY OUR MG SISTER THE HAPPIEST OF WISHES ON HER SPECIAL DAY!!!

HAPPY BIRTHDAY ROA!!

CHECK OUT HER INTERVIEW WE DID WITH HER 😊 SO INSPIRING!! #MWWMG #STL #MYASTHENIAGRAVIS #MGAWARENESS #MWWMGBIRTHDAYS

I am so honored to be featured in SoEmpowered! Magazine! Thank you for this great opportunity!

THERE WAS SO MUCH GOING ON THIS DAY!! MY GRADUATION COMMENCEMENT AND A COUPLE OTHER THINGS BUT WE GOT A JOB DONE!!

AS MY COMMENCEMENT PLAYED IN THE BACKGROUND, THE KID AND I HAD A VIDEO TO SHOOT FOR A PROJECT My MG Sole MG United COMPLETING THIS SHOE. THE KID SHOT THE VIDEO 😊

I'M SO GRATEFUL FOR THIS EXPERIENCE BUT MOST IMPORTANTLY I WANT TO TELL MY SON THANK YOU FOR BEING BY MY SIDE. YALL HAVE NO IDEA HOW STRONG THIS YOUNG MAN IS!! I DO ALL THAT I CAN TO MAKE SURE I PROTECT HIM BUT HE PROTECTS ME!! THIS JOURNEY IS NOT EASY FOR HIM BUT HE WALKS IT WITH ME WITH EASE. I LOVE THIS CHILD WITH EVERYTHING IN ME!!

HERE'S OUR VIDEO IT'S UNDER 3 MINS
HERE'S MY SHOE!! #MGSTRONG #MYMGSOLE

It's FINALLY here!! Grab you a shirt to help support My Walk with MG advocacy work!

They come in different colors AND styles!!

WHO DOESN'T LIKE POPCORN?!?! ESPECIALLY WHEN IT COMES IN A VARIETY OF FLAVORS 😊
My Walk with MG HAS CONNECTED WITH Double Good POPCORN 🍿 TO HELP FUNDRAISE FOR OUR "CARES PROGRAM" TO HELP THE MYASTHENIA GRAVIS COMMUNITY.

OUR TEAM EXPANDED AND NOW WE HAVE A VOLUNTEER STAFF THAT ARE WORKING WITH US AND OUR OUTREACH. THANK YOU ALL SO MUCH FOR BEING APART OF OUR MISSION!!

WE HAVE 4 GREAT DAYS TO SEE HOW MUCH WE CAN RAISE. YOU CAN ALSO MAKE A DONATION AND SEND POPCORN TO ANOTHER POPCORN LOVER!!

GRAB SOME POPCORN AND HELP US GET OUR "CARES PROGRAM" GOING!!

We have a GOAL of selling 50 Candles for MYASTHENIA GRAVIS FUNDRAISER. The funds will help benefit our CARES PROGRAM for individuals with Myasthenia Gravis. Grab your candle using The Good Life Candle Co. LINK

HELP My Walk with MG REACH OUR GOAL BY JUNE 30TH!!
MAKE SURE TO LIKE BOTH PAGES!!