Resources and Support

ALD SUPPORT

Resources and Support

ALD SUPPORT

Support on Your ALD Journey

Support on Your ALD Journey

It’s so important to have other people who know what you’re going through.
Marisa Vutrano
ALD caregiver
It’s so important to have other people who know what you’re going through.
Marisa Vutrano
ALD caregiver

Your Life and Adrenoleukodystrophy (ALD)

No matter where you are in your journey with ALD, you have people whom you can lean on for support. In addition to your care team and plan, there is an entire ALD community, including parents, caregivers, and individuals living with ALD, who understand what you’re going through.

Although their experiences may be different from yours, they understand what it’s like to live with ALD. You can connect with them through online groups that share advice and encouragement. There are also advocacy organizations and support organizations that are here to help. This greater community can help you keep to your plan, allowing you to enjoy life with your family and loved ones.

Taking Care of You: Self-Care for Caregivers

Caregiving for a child with an ALD diagnosis can be overwhelming and can bring out many different emotions and new challenges. There may be times where you can balance being a caregiver, work, and your personal life without issues. However, sometimes taking care of ALD can take an emotional toll. 

Sharing your thoughts and feelings with a mental health professional, as well as the rest of your support team can help you get the support you want. A mental health professional can help you navigate your feelings and emotions about ALD, as well as your role as a caregiver.

It's important to take time for yourself and focus on your own needs and emotions. Allowing yourself, even just a few minutes a day, can help you reduce stress. It can also be helpful to set small goals that remind you to be kind to yourself, such as:

  •  Getting help with caregiving tasks like preparing meals or cleaning

  •  Engaging in activities you enjoy such as gardening, meditation, exercise, or having coffee with a friend

  •  Making time to eat healthy and be active

  •  Reaching out for support from family members, friends, and advocacy organizations
Whether it’s ALD or something else, find people who understand...and can appreciate what you’re going through. Because once you’re part of the community, I feel like it makes us all stronger against the disease.
Jesse Torrey
ALD caregiver
Hear more from Jesse as she opens up about her family’s journey with ALD, and learn about the support she leans on for help.
Watch the Torrey family video
Whether it’s ALD or something else, find people who understand...and can appreciate what you’re going through. Because once you’re part of the community, I feel like it makes us all stronger against the disease.
Jesse Torrey
ALD caregiver
Hear more from Jesse as she opens up about her family’s journey with ALD, and learn about the support she leans on for help.
Watch the Torrey family video