iMaGineMyMG Leadership Council

Annie, 13 years living with MG

Meridith, 15 years living with MG

Robert, 2 years living with MG

People living with MG know what is important to this community. The ideas, content, and connections here were inspired by people living with MG and their caregivers, with insights from a neuromuscular specialist.

EVERYDAY Matters

Life with Myasthenia Gravis can be unpredictable. Learning to seize the good days and be kind to yourself and rely on loved ones on the bad days are essential to your health. Make everyday matter with tools to identify your triggers and red flags and have a voice with your doctor and those who care about you.

Life with Myasthenia Gravis can be unpredictable.
Interested in new tool for better living with MG? Join iMaGineMyMG to receive this free resource!

Interested in new tool for better living with MG? Join iMaGineMyMG to receive this free resource!

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Share Your Everyday

Slide Share Your Everyday MG LUV! – for MG Awareness month of June, a personal project with the grandkids – who better! MG Sole shoe decorating and our sidewalk chalk art!
– Robert
Slide Share Your Everyday – Meridith Slide Share Your Everyday Celebrating one year of my thymectomy. I was diagnosed two years ago, underwent multiple IVIg and a thymectomy surgery. Still on immunosuppressants but feeling stronger!
– Laura
Slide Share Your Everyday Exercises at home with filled 2-gallon milk cartons, from my physical therapist
– Daniel
Slide Share Your Everyday – Meridith Slide Share Your Everyday I take time every day to do things that bring me joy.
– Donna
Slide Share Your Everyday My Mom and I both have MG!
– Niki
Slide Share Your Everyday – Meridith Slide Share Your Everyday My symptoms were droopy eyelids and slurred speech.
– Diane
Slide Share Your Everyday July 2019- Mets game with family
– Annie
Slide Share Your Everyday – Meredith Slide Share Your Everyday Christmas 2018 - Ugly Sweater Party
– Annie
Slide Share Your Everyday – Meridith Slide (click on the photo to read more) Columbia Teen Saddles Up For College While Beating Neuromuscular Disease Slide Share Your Everyday I am so glad that I found this organization who has a heart of knowing MG life. Everyday living with MG is so difficult. Each day you have straggle flare up. But the end of the day the only have the strength to thank the Lord for giving me hope to fight. – Rosario Slide Share Your Everyday Here is a photo of me and my eight week old Landseer Newfie puppy who now weighs 160 lbs! He is a great companion and is always there for a chuckle on a less than perfect day. Slide Share Your Everyday 66 year male starting my fifth year living with MG
– Bob

Your voice is important in conversations with friends and family, your doctor and the MG community. Advocate for the care you need, and make sure your healthcare team understands your symptoms, and how MG is impacting your life.

Share Your Everyday #MGeverydaymatters

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#MGVoice

Your voice is important in conversations with friends and family, your doctor and the MG community. Advocate for the care you need, and make sure your healthcare team understands your symptoms, and how MG is impacting your life.

Track your day-to-day fluctuations to identify trends or important changes in your MG experience, using a journal, app, or even a note on the refrigerator.
Triggers are specific conditions, activities, etc. that make your MG worse.  It is critical to recognize yours and avoid them. Check out the list from ConquerMG or other MG resources.
Recognize Your Red Flag
Red flags are warning signs that it may be a bad day or that you are headed for a flare.  You know your MG better than anyone else possibly can. Recognizing your red flag is valuable in taking control of your life with MG. Take charge and know when to proactively contact your health care provider to figure out a plan to avoid worsening symptoms or crisis.

Your MG BEAT

Everyone moves to their own beat.

How do you know your MG BEAT?

What is your unique rhythm and how have you learned to pace yourself?

iMaGineMyMG.com
  • Doing the things that you want to do without causing stress that worsens symptoms

  • Feeling good about deciding to take the rest you need
  • Planning appropriate physical activity to avoid reducing my overall fitness level
  • Staying active for overall health and avoiding going too far
  • Finding the support you need from family, friends, community, and your health care team

MG Pulse: What’s your BEAT?

How do you monitor your MG symptoms?

iMaGineMyMG does not track your individual responses nor retain any data from these polls

How do you monitor your MG symptoms?

What about fatigue?

Living with MG is often accompanied by the experience of fatigue, both muscle weakness and low energy. These are different experiences, and both can be part of understanding your ideal MG BEAT.

“Never think that you are weak for admitting you are tired and need to rest. You are strong for taking responsibility for your health.”1

Get to know other patients like you and how they describe their experience with fatigue.

Muscle Weakness

  • My muscles are weak, and I just cannot move them anymore

  • My muscles need breaks to get through certain activities

Low Energy

  • I am generally tired and lack energy, or may have difficulty concentrating

  • I sometimes lack motivation to do things, but not because my muscles are tired

MG Pulse: Your experience of fatigue

MG Pulse: Fatigue

iMaGineMyMG does not track your individual responses nor retain any data from these polls

How often do you experience muscle weakness? *
How often do you experience low energy fatigue? *
8 Main Components of Holistic Wellness

Interested in new tool for better living with MG?

Interested in new tool for better living with MG? Join iMaGineMyMG to receive this free resource!

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Talk to your doctor about how you are experiencing fatigue

  • Right now, am I experiencing Muscle Weakness or Low Energy?
  • Is this feeling likely due to my MG or could it have another cause?
  • Do I have any other conditions that also cause me to feel Low Energy or Muscle Weakness?
  • What actions have worked well in the past to overcome this kind of issue?
  • Has this feeling impacted my ability to participate fully in my day?
  • Is this my normal Muscle Weakness or is it something worse? Should I schedule an appointment with my doctor?

Share your experience of fatigue with your doctor

  • Download a fatigue questionnaire that you can use to rate how you are feeling and share at your next appointment.

  • Review this list of statements that people with MG recognize as important. Complete the questionnaire as instructed before visiting your doctor to reflect your fatigue for the previous 7 days.

  • Make a plan to discuss your experiences with low energy versus muscle weakness.

Share your experience of fatigue with your doctor
Download Fatigue Scale

Interested in new tool for better living with MG? Join iMaGineMyMG to receive this free resource!

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Share your experience of fatigue with your doctor

Participate in PROGRESS

Living with MG means finding ways to control your symptoms day to day. A lot of work is being done by universities and companies to develop better treatments for MG and you can participate in this progress. It’s time to get connected!

With every study, we learn more.

We learn what works and what doesn’t. We learn how patients cope with symptoms. We learn what events may precede a crisis.

Where do I find out about studies?

You can find information online or ask your doctor about research studies. You can find out how the specific study works, if they are accepting new patients, and what new treatment is being tested.  Patient organizations post information about studies. You can also search NIH for studies or learn more at RDMD.  Ask your doctor about research studies to help determine if participation is right for you.

With every interaction, we grow stronger.

Take charge by joining a support group, participating in an event, volunteering or just reaching out to someone who knows what it’s like to live with MG.

Get connected!

Many organizations provide connections to others via social channels and live and virtual events. Get connected!

With every voice, we create change.

Use your experience and your voice to impact the MG community. Live your best life with MG by self-advocating with your doctor.

Live your best life with MG by self-advocating with your doctor

Work with great organizations to build awareness, or encourage others, or speak out for yourself to live your best life with MG by self-advocating with your doctor.

iMaGine my possibilities

You are not alone. The rare diseases and MG community are here to support you. There are so many ways to share your story, spread the word and engage with others.

You can lean on these groups for resources and connections to the MG and rare disease community.

MG: Myasthenia Gravis Foundation of America

Myasthenia Gravis Foundation of America (MGFA) creates connections, enhance lives and aims to cure Myasthenia Gravis through a nationwide support network for those affected by MG, and spearheading research.

Access their Community Resources page to learn how to connect with others and raise awareness.

MGA of the heartland

The Myasthenia Gravis Association is dedicated to supporting patients, families, friends, and communities impacted by Myasthenia Gravis with in-person outreach and programs for the Arkansas, Missouri and Kansas areas.

Access their Programs and Services for peer-to-peer programs, onsite clinics and community events.

MDA For Strength, Independence & Life

Muscular Dystrophy Association is focused on combating muscular dystrophy and diseases of the nervous system (Myasthenia Gravis) by funding research, providing medical and community services, and educating health professionals and the general public.

They are a great source of information on MG, as well as a platform to connect with others living with MG and tools and tactics to become your own advocate. Learn more about their work in MG and MG family and patient symposia.

Conquer Myasthenia Gravis is driven by the desire to help MG patients get prompt diagnosis and optimal care. Focused on improving MG patient lives through programs of patient services, public awareness, medical research funding, professional education, advocacy, and patient care.

Learn about their program and services and ways to get involved.

EVERYLIFE Foundation for Rare Diseases

The EveryLife Foundation provides training, education, resources and opportunities to support advocacy, education, research and resources for the rare disease community. Connect with the EveryLife Foundation to meet other advocates, hear their stories and learn how they became engaged

Find opportunities to engage in advocacy events both at home and in Washington, DC

Global Genes: Allies in Rare Disease

Global Genes is a global advocacy organization for individuals and families fighting rare and genetic diseases. Through advocacy outreach and events, Global Genes educates, equips, and empowers patients with tools and resources to influence change and improve access to treatments for their disease.

Participate in their annual conference, research symposia and drug development conference. Join their advocacy network to educate and advocate around rare disease.

NORD: National Organization for Rare Disorders

NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD is committed to the identification, treatment and cure of rare disorders through programs of education, advocacy, research and patient services.

Download the Patient and Caregiver Resource Toolkit or find opportunities to engage in their Patient Engagement Conferences, Seminars and other advocacy events.

Interested in new tool for better living with MG? Join iMaGineMyMG to receive this free resource!

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Myasthenia Gravis & Overall Wellness: A Holistic Approach

References

1De Wet R. Why I am not ‘just tired.’ Myasthenia Gravis News. https://myastheniagravisnews.com/2019/01/04/myasthenia-gravis-tired-fatigue-rest/ January 4, 2019. Accessed May 4, 2020.

2Cella, DavidPhD; FACIT Fatigue Scale (Version 4); available at www.FACIT.org. Accessed May 20, 2020.