التعايش مع FSHD

Living with facioscapulohumeral muscular dystrophy (FSHD) comes with different challenges, but you don’t need to travel on this journey alone. The FSHD Society is committed to offering individuals and caregivers living with FSHD comprehensive resources for navigating life with FSHD no matter where they are on their journey. The FSHD Society is here to provide you with the tools and information you need to live your best life.

فهم FSHD

FSHD is a complex condition, but knowledge is power. Explore our resources to learn about every stage and manifestation of FSHD.

التشخيص

Getting a formal FSHD diagnosis is important for you to receive the care that you need. Do you think you or a family member might have FSHD? Having trouble understanding where to start? Look through our resources to understand how to get an FSHD diagnosis.

اعرف المزيد

الأعراض

Early FSHD symptoms are often overlooked or misdiagnosed. Even many physicians don’t recognize the symptoms. Find out more about what FSHD symptoms look like.

اعرف المزيد

جامعة FSHD

Knowledge is power! We want you to have all the tools you need to navigate your journey. Check out our webinars and other educational resources to help you navigate your journey.

Learn From Experts

إدارة FSHD

Living with FSHD presents unique challenges, but you’re not alone. We’re here to support you with tools and resources that make a difference.

  • بيتر لايف FSHD

    Helping you take control of your FSHD journey and helping develop potential treatments faster.

  • العثور على الرعاية

    Putting together a team of FSHD-experienced healthcare providers is essential. We can help connect you.

  • مستكشف FSHD Navigator

    Our FSHD Navigators offer personalized guidance and resources you need to live your best life with FSHD.

  • Symptom Management

    FSHD has many healthcare symptoms. Learn about how you can manage these symptoms and some of the medical concerns you should be aware of.

Resources for Every Stage

Whether you’re newly diagnosed or have been living with FSHD for years, we have resources tailored to your needs.

  • Newly Diagnosed?

    An FSHD diagnosis, for you or a loved one, comes with emotions and questions. The Society is here to help.

  • معدات التكيف

    Discover and access the latest tools and equipment available to assist you throughout your journey with FSHD.

  • Care Coordination

    The Society helps healthcare providers connect and collaborate on care for individuals living with FSHD.

  • تنظيم الأسرة

    Advancements in genome research make it possible for couples to be mindful about family planning.

  • Financial and Legal Resources

    The Society can help provide financial and legal resources to individuals and families living with FSHD.

انضم إلى المجتمع

You’re not just living with FSHD. You are a part of a strong, supportive community. Connect with others in the FSHD community who understand your journey.