Share Your Story. Shape the Future of DM Care.
Your lived experience can help improve access to future treatments, insurance coverage, and quality care for people living with myotonic dystrophy (DM).
This summer, the Myotonic Dystrophy Foundation (MDF) invites individuals living with DM1 or DM2 and their caregivers to take part in a storytelling campaign. Each week on Thursday, from July through August, we'll share a new prompt asking about your real-life experiences with DM, whether that's muscle weakness, navigating insurance, or managing symptoms like myotonia (when muscles stay tight or "stuck" after use).
Whether you're newly diagnosed or decades into your DM journey, your story can help create meaningful change.
Why Your Story Matters
Every voice in the DM community matters. Your story has the power to:
- Improve insurance coverage and disability protections.
- Support access to emerging therapies and care options.
- Inform policy makers and healthcare leaders.
- Build a stronger, more connected DM community.
By sharing your lived experience, either navigating life with DM or supporting a loved one, you can help others understand the urgent needs and daily realities of the myotonic dystrophy community. Click here to Share Your Story! >>>
How It Works
Each week on Thursdays, MDF will post a new prompt focused on a different aspect of life with DM. You can participate in one week or all eight!
Stories can be submitted in three ways:
- Type your response directly into the form.
- Upload a Word or text document.
- Upload a short video (up to 3 minutes).
Each response should be no more than 500 words or 3 spoken minutes. You'll also have the option to share your story anonymously or include your name and relationship to DM.
Reminder: Anyone living with DM or their caregivers is invited to participate!
Let’s make sure decision-makers understand what it’s really like to live with DM. Share your story and help drive change for the DM Community! >>>
Weekly Prompts
#7. Accessible Equipment
Accessible Equipment - from mobility devices to communication tools; the right equipment can help people stay independent, but it’s not always easy to access or afford.
Here are some prompts to help guide your story:
- For individuals living with DM:
- What equipment or devices help you with your DM related symptoms most and how did you get them?
- Have you faced challenges in paying for, choosing, or adjusting to using accessible devices or equipment?
- How has managing these expenses affected your household budget?
- Are there devices that would help but you are not able to access?
- For Caregivers:
- How do you help your loved one find and use the accessible equipment or devices they need?
- What difference has the right equipment or device made in your caregiving routine?
#6. Managing Cost
Managing the cost of myotonic dystrophy goes beyond medical bills. Living with DM can bring hidden costs like travel, home modifications, equipment (such as mobility devices, respiratory aids like BiPAP, CPAPs, etc.), and lost income.
Here are some prompts to help guide your story:
- For individuals living with DM and Caregivers:
- What are the biggest out-of-pocket costs you face because of DM?
- How have these costs affected your choices or financial security?
- How has managing these expenses affected your household budget?
- Have you had to make difficult financial decisions because of DM-related costs?
#5. Myotonia
For many people living with DM, myotonia (when your muscles stay tight or don’t relax easily after movement) can interfere with walking, gripping objects, swallowing, or even speaking.
Here are some prompts to help guide your story:
- For individuals living with DM:
- How does myotonia affect your daily activities or safety?
- Are there moments when myotonia has caused frustration, embarrassment, or unexpected challenges?
- How might your life be changed if you did not have to deal with myotonia?
- For Caregivers:
- How do you see myotonia affecting your loved one’s independence or confidence?
- Have you changed your caregiving routines to help manage myotonia?
- How might your caregiving experience change if your loved one did not experience myotonia, or the effects were lessened?
#4. Accessing Specialty Care
Seeing healthcare specialists who understand DM is critical, but many people face long wait times, long drives, or simply can’t find expert care nearby. Specialty care is considered any health care service outside of a primary care doctor /general practitioner (GP), such as gastroenterologist, physical therapist, nutritionist, cardiologist or even a neurologist.
Here are some prompts to help guide your story:
- For individuals living with DM and Caregivers:
- How easy is it for you or your loved one to see a health care provider who truly understands DM?
- How has having or not having access to specialty health care affected your or your loved one’s life?
- How far do you need to travel to get specialized health care for you or your loved one?
- What sacrifices have you made to get access to, or help your loved one get access to the right health care?
#3. Getting to Medical Appointments
Getting to medical appointments, therapy, mental health, or specialty clinics is often harder than it seems, especially when mobility, distance, or cost are barriers.
Here are some prompts to help guide your story:
- For Individuals Living with DM:
- How do you typically get to DM related appointments, and what challenges have come up?
- Has transportation ever kept you from getting the care you needed?
- For Caregivers:
- What does arranging or providing transportation look like for your loved one/s?
- How has medical travel affected your daily schedule, work, or energy?
#2. Navigating Insurance or National Health Systems
Accessing care, medications, and treatments for DM often depends on what insurance or your national health system will cover, and figuring out that system can be stressful, confusing, and sometimes unfair.
Here are some prompts to help guide your story:
- For Individuals Living with DM or Caregivers Navigating Insurance (including Medicare/Medicaid/Veterans Admin):
- Have you ever had to fight to get something covered by insurance?
- How has insurance approval or denial affected your/your loved one’s care or peace of mind?
- What insurance hurdles have you had to manage?
- How has dealing with insurance impacted your time, stress, or finances?
- For individuals living with DM or Caregivers in countries with national health systems:
- Have you experienced challenges like long wait times, strict eligibility rules, or needing to appeal a decision?
- How has navigating your national health system affected your/your loved one’s care, daily life, or stress level?
#1. Muscle Weakness
Muscle weakness is one of the most common and life-changing symptoms of DM. It can affect everything from walking and lifting to speaking, eating, and daily independence.
Here are some prompts to help guide your story:
- For Individuals Living with DM:
- How does muscle weakness affect your daily routine or independence?
- What would be possible if your muscle weakness was improved?
- For Caregivers:
- How does muscle weakness affect their quality of life?
- How would your caregiving activities change if their muscle weakness was improved?