Coping and support

Caring for a child or family member with a chronic and progressively worsening disorder such as metachromatic leukodystrophy can be stressful and exhausting. The level of daily physical care increases as the disease progresses. You may not know what to expect, and you may worry about your ability to provide the care needed.

Consider these steps to prepare yourself:

• Learn about the disorder. Learn as much as you can about metachromatic leukodystrophy. Then you can make the best choices and be an advocate for yourself or your child.
• Find a team of trusted professionals. You'll need to make important decisions about care. Medical centers with specialty teams can offer you information about the disorder, coordinate your care among specialists, help you evaluate options and provide treatment.
• Seek out other families. Talking to people who are dealing with similar challenges can provide you with information and emotional support. Ask your doctor about support groups in your community. If a group isn't for you, maybe your doctor can put you in touch with a family who has dealt with the disorder. Or you may be able to find group or individual support online.
• Consider support for caregivers. Ask for or accept help in caring for your loved one when needed. Options for additional support can include asking about sources of respite care, asking for support from family and friends, and taking time for your own interests and activities. Counseling with a mental health professional may help with adjustment and coping.