Your story can help inspire, educate, and connect others living with myasthenia gravis (MG), their caregivers, and the broader community.

We understand that sharing an intimate look into your life and experiences with Myasthenia Gravis may be a new experience for some, while others may feel comfortable opening up and sharing their perspective without any guidance. Wherever you fall on this spectrum, your voice matters, and your story is uniquely yours to tell. For those seeking inspiration or suggestions, we’ve provided some topic prompts below to help guide you. But remember, when it comes to your own story, there really is no wrong answer.

Your own perspective and experience have the power to change another person's life. Someone may read your story and not feel so alone, or a tip or trick you’ve adopted to ease your life may save a stranger future grief or hardship they will no longer need to endure. We as humans need connection, and this is a beautiful way to achieve that and give back to the fight. Sharing your story can also be empowering and so much of living with a rare disease is feeling out of control. There is a cathartic beauty in knowing your pain can help others.

Your story has the potential to be featured on our website and/or in an upcoming book that highlights the untold stories of those affected by MG.

story submission suggestions

Consider addressing some of the following prompts to guide your story:

Symptoms and Diagnosis

• What symptoms led you to seek medical attention?

• How long did it take to receive a diagnosis?

• Were there any specific challenges in finding the right provider or specialist?

• What tests or evaluations confirmed your diagnosis?

Navigating Healthcare

• How easy or difficult was it to find the right provider for your care?

• Did you encounter misdiagnoses or delays in your journey to a diagnosis?

Lessons Learned

• What do you wish you had known when you were first diagnosed?

• What advice would you give to someone newly diagnosed with MG?

Lifestyle and Management

• Have you discovered any specific changes that have improved your symptoms?

• What treatments or strategies have been most effective for you?

• How has MG impacted your daily routine, work, or hobbies?

Mental Health and Emotional Resilience

• How has MG affected your mental health?

• What challenges have you faced emotionally, and how have you addressed them?

• What helps you stay positive and resilient?

Your Life Today

• Where are you now in your MG journey?

• How do you manage MG day to day?

• What victories, big or small, have you achieved while living with MG?

Beyond the Diagnosis

• What do you want the world to know about you outside of your disease?

• What passions, interests, or achievements define you beyond MG?

writing suggestions For individuals Living with Myasthenia Gravis

If you are a caregiver, a parent, family member, spouse, or partner to someone living with MG, your story is equally important. Here are some prompts to consider:

Your Role as a Caregiver

• What is your relationship to the person living with MG?

• How did you first become aware of their symptoms?

• What role have you played in their healthcare journey?

Challenges and Lessons

• What were the biggest challenges you faced when supporting your loved one through diagnosis and treatment?

• What have you learned through this experience that you wish you had known earlier?

Impact on Your Life

• How has caregiving affected your own life and mental health?

• Have you found effective ways to balance caregiving with other responsibilities?

Support and Resources

• What resources or support systems have been most helpful to you?

• Are there any resources you wish had been available?

Your Perspective

• What have you learned about resilience, hope, and strength from your loved one’s journey?

• What advice would you share with others in a similar caregiving role?

writing suggestions For myasthenia gravis Caregivers

additional Guidelines for mg Story submissions

Be Honest From Your Heart: Share your authentic experiences, challenges, and victories.

Respect Privacy: Avoid including specific names of healthcare providers or facilities. Please refrain from sharing HIPAA-protected medical information.

Stay Focused: While we encourage creative storytelling, submissions should center on your journey with MG.

Length: Submissions can range from a few paragraphs to several pages. Share as much as you are comfortable with.