Adrenoleukodystrophy is a rare genetic brain disorder that has been categorized into three different forms: childhood cerebral adrenoleukodystrophy (CALD), adrenomyeloneuropathy (AMN), and Addison’s disease.
If you or your child has ALD, work with your primary care physician to create and maintain a treatment plan to ensure the best possible care.
What is a treatment plan?
A treatment plan details important information about a disease, its symptoms, and medications taken. It should also include medication dosages and times that they should be taken, as well as possible side effects. The plan should also include steps to follow in case you or your child experience certain symptoms or side effects due to treatment.
Finally, the plan should include the phone numbers for your primary care physician and any other emergency contacts. This could be a relative or healthcare proxy, who can make decisions on your behalf or your child’s.
Why is it important to have a treatment plan?
Having a treatment plan is important to ensure that you or your child receive the best possible care. ALD is a rare disease, and many physicians and clinicians may not be familiar with it. Having information readily available to give to them can improve the healthcare for you or your child. A treatment plan is also a good way to update changes to disease progression and necessary care.
Who gets a copy?
You should share the treatment plan with your healthcare providers to ensure they are up-to-date with current medications and treatments. A copy should also be available for any emergency room personnel in case of need.
Your child’s treatment plan should also be shared with their school or daycare. Any administrators, teachers, and nurses should have a copy of the plan. This will ensure they know what care they may need to provide during the day, and what to do in case of any disease- or treatment-related issues. Discussing the plan with your child’s school or daycare can also help inform teachers and administrators of any restrictions your child might have and the possible need for an individualized education plan.
Share your treatment plan with your healthcare proxy and/or a relative who can make medical decisions on your behalf in case you cannot. If you are employed, you may want to give a copy of your plan to a workplace representative. This way, they can call emergency contacts for you, if necessary.
How often should I update the plan?
You should review and update the treatment plan as necessary after each doctor’s appointment. ALD is a progressive disease and symptoms are likely to worsen over time. Keeping the plan up-to-date and sharing any changes with everyone involved will help ensure you or your child continue to receive the proper care.
Last updated: Nov. 4, 2020
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Adrenoleukodystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
