Recap of Myasthenia Gravis

dedicated to raising awareness of Myasthenia Gravis.

We have been talking a lot about myasthenia gravis!

What have we learned?

Thank you for becoming aware of MG!

We have explored the rare, chronic autoimmune neuromuscular disorder called myasthenia gravis with the intention of raising awareness.

Maybe this recap will help refresh what we’ve read in the posts, listed in right side column.

So, what have we learned?

The main focus throughout the month was to tell one person one thing that we learned about myasthenia gravis. …there will always be time to learn and share about this debilitating disease!

Recap of Myasthenia Gravis Awareness Month
– in order of appearance –

June has provided us with an opportunity to raise awareness of myasthenia gravis, but we can now continue to learn and research and study and understand this debilitating disease, which most times comes by surprise and stays for a lifetime.

Awareness

Getting us started, we learned that in 2020, there were an estimated 500,000-700,000 cases of myasthenia gravis worldwide, with the frequency number used 20/100,000 of population, per Medlineplus.gov. While it may be rare, for those diagnosed with it, MG is life changing —forever.


Click to read more

Children can read about MG

I am so glad Jenny Coffey wrote (and illustrated) I’m Still Me: My Life with MG about her childhood “adventure” with MG. I find the perspective so positive, so filled with optimism, a tone that will transfer when reading to children, as well as when children read to themselves.


Tell One Person about MG

Tell one person, start a ripple about myasthenia gravis. Say it:
my-us-THEE-nee-uh GRAV-is, (GRAY-vis) – myasthenia gravis.

Your words will expand and an awakening will begin…those ripples will become waves of knowledge and an ‘aha’ moment for someone.

That’s what awareness can do!


Our Myasthenia Gravis story counts.

Are you a caregiver, a patient, a physician, or anyone who has had an experience in the world of myasthenia gravis? Consider sharing few moments, perhaps a few paragraphs, from a true story, a comment about a situation, an episode that was not expected…something that could help someone else. Something we all can learn from. Send by email and we will post it.


A Story from one with MG

For those who are ready to learn more, today’s featured article by Rebekah Dorr offers a description of Myasthenia Gravis that reads like a picture. Herself an MG patient since 2011, Rebekah is amazingly passionate about caring about those with MG. She shares information and communicates to encourage them through her Myasthenia Gravis Unmasked Facebook site.

Read Rebekah’s story on this page. An incredible lady!


MG Symptoms to recognize

Among symptoms most frequently associated with myasthenia gravis are drooping eyelids, double vision, weak arm and leg muscles, difficulty chewing, and shortness of breath.

This is not an exhaustive list, but review it on the page where far more are listed. Speaking with many patients, they would confirm these as ‘early symptoms.’


Myths we might hear

Remember, this is true: Myasthenia Gravis is a rare, very complex, disease and there are other diseases that mimic part of it. Therefore, it may take time for conclusive diagnosis! But having good symptom experiences to report is helpful to physicians so they can avoid referencing myths—that are likely not true, such as:

  • MG has no pain
  • Only growing pains
  • Inflamed knees
  • Everyone gets tired
  • Just wants attention
  • Exercise will make it better

Myasthenia Gravis terminology

When talking about myasthenia gravis it helps to know the vocabulary, the terms used by others, the words recognized by doctors that trigger their thinking in certain ways.

We can contribute to our own health through understanding if we are somewhat aware of what words mean.


How myasthenia gravis feels

…It is a bizarre feeling to be normal one moment and within seconds you feel your body has rejected you. Yet, in a way, it has. The muscles do not get the message from the brain and the effort to try to move anyway is too fatiguing….


Who might get MG

The disease seems to be able to strike anyone at any age, including children. MG is more frequently seen in women aged 20 to 30, and men aged 50 and older. Men over 60 and women under 40 are at higher risk.


Myasthenic crisis

Myasthenic crisis is an emergency.

Myasthenic crisis happens when the respiratory muscles become too weak to move enough air in and out of the lungs. An emergency situation exists. Such a situation could necessitate a ventilator to help with breathing.


Myasthenia Gravis flareups

Flares.

An important possible behavior experienced by those with myasthenia gravis is a flareup… “…often an acute, temporary worsening or increase of symptoms…”


Causes of Myasthenia Gravis

Cause? Hereditary? Can MG get worse?

Myasthenia gravis is inconsistent, called the ‘snowflake disease,’ different with each person, not to mention the overlap in symptoms with other diseases, making it hard to diagnose. Keep checking with the numerous websites to add to your knowledge.


Prepare for appointment

Listen when Myasthenia Gravis speaks.’

Prepare for your doctor appointment with meaningful data to be able to be your own advocate as much as possible.


LOOKING FOR THE COMMENT SECTIONS? Click titles of blog articles or list on right side and you will go to each post separately, where comment section is at the bottom. Thank you.


!! This is an awareness site only. !!
No diagnosis or treatment suggestions. Mainly, it is support and links for those who are searching for ‘why they have weak muscles.’


Watch our right side bar to see most recent posts about many aspects of Myasthenia Gravis.

Please, SHARE THIS SITE ...
others can learn by reading what you have discovered… a site solely for awareness of Myasthenia Gravis.

Want to walk for,
or donate Canada to,
Myasthenia Gravis Society of Canada?
Visit Step Up for MG Fit or Press Release


Recap of Myasthenia Gravis © 2021 Judith Allen Shone

Children can read about MG

dedicated to raising awareness of Myasthenia Gravis.

Over the years, a philosophy of life has emerged. One that I can live with, one that resonates with my core: “I’m going to be very happy, and then do everything I have ability and time to do after that.”

It did not happen overnight, but I now realize the importance of having that way of thinking for ME…giving me permission to let the stress of life evaporate.

Exciting to find this book!

I’m Still Me, My Life with MG, is written by Jenny Coffey and illustrated by Jenny Coffey and Caleb Sawyer. I don’t know the assigned reading level, but I believe all levels of readers will benefit, although in appearance, I first think of children.

When I read this wonderful book by author, (Smiley) Jenny Coffey, with her positive tone, it warmed my heart. The story fit not only into my current caregiver life and my recently resurfacing MG life, but also into the style of life I had consciously yearned for all my nearly-80 years.

I am so glad Jenny Coffey wrote (and illustrated) I’m Still Me: My Life with MG about her childhood “adventure” with MG. I find the perspective so positive, so filled with optimism, a tone that will transfer when reading to children, as well as when they read it to themselves.

Why am I qualified to praise this book?

I have had myasthenia gravis (MG) since I was twelve, (for sixty-seven years) and know how much this is going to help youngsters have a better understanding of classmates or others who appear unfamiliar in some way, in this case, with a disease causing muscle weakness. This book will possibly help some understand the feelings of one with MG so that person might not have to go through shame and hurt.

Both parents and children will be able to read it, or parents can read to children, either way, both will become more aware of a rare, debilitating, disease that is going undiagnosed for many…(I am not sure why.) June is Myasthenia Gravis Awareness Month and I encourage everyone to read this book, ask your library to add it, share it with schools.

Beginning in June, Myasthenia Gravis Awareness Month, and maybe every chance you have thereafter, I ask you to TELL ONE PERSON the name of the disease and how muscle weakness affects the body. I have heard it spoken both “my-us-THEE-nee-uh GRAV-is” and “my-us-THEE-nee-uh GRAY-vis.”

I see a publishing date of 2019 noted on Amazon…. go have a look at this adorably illustrated, beautifully characterized book with important messages for us all.

Thank you, Judy Shone

LOOKING FOR THE COMMENT SECTIONS? Click titles of blog articles and you will go to each post separately, where comment section is at the bottom. Thank you.

Watch our right side bar to see most recent posts about many aspects of Myasthenia Gravis.

Please, SHARE THIS SITE ...
others can learn by reading what you have discovered… a site solely for awareness of Myasthenia Gravis.


Children can understand MG (c) 2021 Judith Allen Shone