Giving families hope, and the resources they need to fight ALD.
The ALD Alliance & ALD Newborn Screening.org help families across the United States that are newly diagnosed with Adrenoleukodystrophy (ALD) by giving them the resources they need to fight this rare and devastating disease. This fight begins by making sure every baby born in the United States is tested at birth for ALD.
The ALD Alliance was established to address the need for information and newborn screening with respect to Adrenoleukodystrophy. In addition, we strive to support and encourage those afflicted and their families as they struggle to endure, adjust and cope with the demands of the disease. Learn more about The ALD Alliance and our Board of Directors.
Together We Can: Life with ALD
A Message from our Founder
The diagnosis of ALD can be overwhelming. Remember you can have a normal life after the diagnosis. Managing your life with this diagnosis is doable. Know that your life goes beyond the doctor’s office and there are many support systems to help you navigate this disease. You may want to keep a journal to describe how you are feeling each day and keep a record of anything that seems out of the ordinary.
Please make sure to seek support and reach out to family, friends or others affected by ALD if you feel alone. I know from experience most have never heard of this disease. It may be good to join a Facebook group and seek others going through the same things as you are.
You are not alone and can connect with others when you need someone to talk to. Make sure to take care of your mental health. You can’t help your loved one if you are not taking care of yourself first. There are feelings of anger, confusion, sadness, etc.
Please make sure to reach out to a psychiatrist or a support group if you need to. Take care of your body and your mental health at the same time. Seeing a therapist, eating healthy, exercising is important to keep your overall life in a good place and keeping positive about working through this diagnosis.