Living with ALD

BUILDING YOUR
CARE TEAM

Living with ALD

BUILDING YOUR
CARE TEAM

Managing
Adrenoleukodystrophy
Requires Support
Managing
Adrenoleukodystrophy
Requires Support

In order to manage your child’s health and to help monitor for potential progression to cerebral adrenoleukodystrophy, your family may choose to work with a select group of health care professionals (also referred to as a care team). You can help take control of your child’s experience with ALD by building a plan that works for you and your family.

In order to manage your child’s health and to help monitor for potential progression to cerebral adrenoleukodystrophy, your family may choose to work with a select group of health care professionals (also referred to as a care team). You can help take control of your child’s experience with ALD by building a plan that works for you and your family.

It’s just getting up in the morning and knowing you have that support network behind you is amazing. And I could not do it without them.
Anna Rowell
ALD caregiver
It’s just getting up in the morning and knowing you have that support network behind you is amazing. And I could not do it without them.
Anna Rowell
ALD caregiver

WHY YOUR CARE TEAM IS IMPORTANT

The way that your care team comes together may vary. You may have one physician who is an ALD specialist that helps you build out the rest of your team or you may create your own team by finding the following pediatric specialists: 

Endocrinologist

An endocrinologist is a doctor that specializes in diagnosing and treating diseases of the endocrine system (glands, hormones, and metabolism). They can help you and your child manage adrenal symptoms and provide referrals to a neurologist.

Neurologist

A neurologist is a doctor that specializes in diagnosing and treating diseases of the brain, spinal cord, and nervous system. A neurologist or ALD specialist will monitor your child for cerebral ALD through regular magnetic resonance imaging (MRI) scans. They will also consult with you and the rest of your care team if any signs of cerebral ALD are detected. Neurologists can help coordinate care and resources to help you and your family manage ALD.

Neuroradiologist

A neuroradiologist is a doctor that specializes in interpreting x-rays and magnetic resonance images (MRI) of the brain, spine and spinal region. A neuroradiologist can work with the rest of your care team to diagnose ALD and review MRI scans.

Transplant Specialist

A transplant specialist is a doctor that has expertise in bone marrow and stem cell transplants. If cerebral ALD is detected, a transplant specialist will consult with you and your family about next steps.

Even before cerebral ALD is detected, it may be helpful to connect with a transplant specialist when building out the rest of your care team. Having an established relationship with a transplant specialist can help you feel prepared for the future.

Geneticist or genetic counselor

A geneticist or a genetic counselor is a professional who specializes in genetic conditions. They can help you understand how ALD might affect your family, as well as diagnose family members who may have ALD.

Even before cerebral ALD is detected, it may be helpful to connect with a transplant specialist when building out the rest of your care team. Having an established relationship with a transplant specialist can help you feel prepared for the future.

An ALD specialist, such as a neurologist is someone who specializes in monitoring ALD. If your ALD specialist is not local, they may be able to review your child’s MRI remotely. Remember: Finding a team that works for you and your family may take time. Patient advocacy organizations can help you locate an ALD specialist.

Your child’s pediatrician, nurses, social workers and other health care professionals may be part of your care team as well. If your child experiences any mobility issues, you may be referred to a physical therapist. Your doctor may also recommend a nutritionist to work with your child to help manage ALD.

This extended care team may provide what is referred to as palliative care. Palliative care is a type of supportive care for someone with an ongoing condition illness, regardless of stage or prognosis. This team may help to connect you to resources and further education when needed. 

Get the support you need

Get information and additional support that can help you navigate ALD as you build your care team.

Your ALD Care Plan

Managing ALD is possible with an ALD care team and a plan. Once you have a team in place, you
can partner with them to build a care plan that works for you and your family. 

Your ALD care plan checklist:

  •  Find an ALD specialist who can help you build your care team

  •  Manage adrenal symptoms with your endocrinologist

  •  Monitor for cerebral ALD with your neurologist or ALD specialist

  •  If needed, discuss treatment options for cerebral ALD with a transplant specialist

  •  Speak with a geneticist or genetic counselor about whether they recommend that certain members of your immediate and extended family be tested 

Community of Support

Your care team will be there to provide you with advice and support. But beyond that, there is an entire ALD community that is here to help you.

Organizations like the Global Leukodystrophy Initiative, World Leukodystrophy Alliance, ALD Connect, Aidan Jack Seeger Foundation, and the European Leukodystrophy Association International can provide you with additional information and resources. 

Community of Support

Your care team will be there to provide you with advice and support. But beyond that, there is an entire ALD community that is here to help you.

Organizations like the Global Leukodystrophy Initiative, World Leukodystrophy Alliance, ALD Connect, Aidan Jack Seeger Foundation, and the European Leukodystrophy Association International can provide you with additional information and resources.