Coping and support

Caring for a child or family member with a lifelong disorder such as MCAD deficiency can be stressful and exhausting. Consider these strategies:

• Learn about the disorder. Learn as much as you can about MCAD deficiency. Then you can make the best choices and be an advocate for yourself or your child. Help family members, caregivers, teachers and friends understand the condition, the care needed, and the consequences of not following dietary instructions.
• Find a team of trusted professionals. You'll need to make important decisions every day about care. Medical centers with specialty teams can offer you information about the disorder, as well as nutritional advice and support, and can help you manage care.
• 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 a group or individual support online.
• Ask for help from family and friends. Ask for or accept help from family and friends in caring for your loved one when needed. Take time for your own interests and activities. Counseling with a mental health professional may help with adjustment and coping.