Newly Diagnosed: You Are Not Alone on Your Journey

Whether you are a patient or a caregiver, it’s important to remember that you are not alone on this journey with muscular dystrophy and that others have been in your shoes. Here’s a collection of our columnists’ words that they would like to share to help guide, inspire, and encourage you.

Why It’s So Important to Find Your People

At the dawn of her son’s LAMA2 diagnosis, columnist Prudence Jones felt alone. Soon, though, she found a community of people who “get it.” She urges others at the beginning of their journey or those who have been to scared to reach out to find their own community.

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Welcome to the Castle: Facing Down and Defeating Your Fears

Columnist Andy Rusch has become the hero of his own story, where he has confronted his fears and faced down the dragon known as “Becker.” His is a tale of acceptance and resilience, and he encourages others to feel empowered to be heroes in their own stories as well.

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An Open Letter to Duchenne Parents

Columnist Hawken Miller says parents of children with Duchenne muscular dystrophy are the real warriors and he doesn’t want them to forget it. He encourages them to keep up the fight for their children.

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Developing My Talents Has Helped Me to Thrive

Hawken writes that despite the unpredictability of living with Duchenne, he thrives by using his talents. He encourages others in the disabled community to take charge of one part of their future and use their talents to thrive.

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It’s Essential to Be Your Own Health Advocate

Columnist Ralph Yaniz encourages everyone to be their own advocate — to ask questions, challenge their doctors, and be part of the solution. He suggests going through treatments and writing down a few questions the night before each appointment to be prepared.

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Finding Doctors Who Understand Your Disease

Columnist Leah Leilani emphasizes the importance of doctors with the determination to understand diagnoses and do everything they can to help with urgent needs. She believes patients shouldn’t have to convince others that they are in need of help.

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Visit the Muscular Dystrophy News Today forums to connect with others in the muscular dystrophy community. These forums are designed for patients, caregivers, and medical professionals to discuss issues, ask questions, and share experiences.

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