Dealing with Muscular Dystrophy
After being diagnosed with MD, a serious, degenerative disease, you are likely to experience a flood of emotions.
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Dealing with MD
After being diagnosed with MD, a serious, degenerative disease, you are likely to experience a flood of emotions. It's important to talk now with your loved ones and to reach out to support centers - online or in person -- during the initial stages of your journey:
- Mayoclinic.com: Muscular Dystrophy - Coping & Support
- Parent Project Muscular Dystrophy
- Muscular Dystrophy Association Online Community
Information and Recommended Links for Survivors of Muscular Dystrophy
- The United Dystrophinopathy Project and The Online Duchenne and Becker Muscular Dystrophy Patient Registry
- Muscular Dystrophy Family Foundation: Services
- Parent Project Muscular Dystrophy: Managing Daily Life
Insurance & Work Matters
Insurance Matters
You may qualify for Social Security Disability, regardless of your age:
- SocialSecurity.gov: Benefits for Children with Disabilities (PDF)
- SocialSecurity.gov: Understanding Supplemental Security Income (SSI)
Work Matters
Help make workplaces more accessible to people with muscular dystrophy and other disabilities:
Georgia Institute of Technology: Workplace Rehabilitation Engineering and Research Center
Health-care Providers Who Can Help
As someone with MD, or the parent of a child with MD, you may see physical therapists, speech therapists, orthopedic surgeons, and/or your regular primary care physician (or pediatrician). Because MD is genetic, you may decide to see a genetic counselor, too:
University of Rochester Medical Center: Educational Resources - Genetic Counseling & Testing
Resources to Find Doctors
- American Physical Therapy Association - Find a PT
- American Speech-Language-Hearing Association - Find an Audiologist or Speech-Language Pathologist
- American Academy of Orthopaedic Surgeons - Find an Orthopaedist
- National Society of Genetic Counselors, Inc. Search
The Emotional Rollercoaster
Having muscular dystrophy is a very emotional experience. It's important to do your best to continue living your life as normally as you're able, participating in the same daily activities you've always done. A support group can be invaluable as you learn to manage the extreme feelings living with MD can bring up:
