Support Comes in Many Forms

The most important support that you can find is one that works for you and makes you feel balanced and your heart full. It is very much an individual journey because there is not simply one way to get support or show support. Some ideas include:

  • advice from your doctor or a therapist
  • a visit or phone call from a family member
  • networking with someone with the same or similar leukodystrophy
  • social media groups or blogs
  • art or music therapy
  • religious consultation
  • holistic psychotherapy, meditation and massage
  • take care of yourself with a healthy diet, exercise, change of scenery or simple things that can help you change up your day and give your attitude a lift

The United Leukodystrophy Foundation hosts an annual conference to bring families together across all leukodystrophies. It is a great opportunity to learn from others, share your journey and experiences and connect with families and medical professionals who all live in the rare world of leukodystrophy.

Like caregivers, patients often feel isolated and alone. By sharing your story with someone, it can truly help a friend in need or be a therapeutic outlet that helps you. It doesn’t have to be personal, but it’s about the sharing and taking time to talk and listen to others.

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