Health Insight

June 24, 2020June 24, 2020

Reproductive Options for Adrenoleukodystrophy Carriers

Health Insight

If you know you are a carrier of adrenoleukodystrophy (ALD), or if you or your partner has ALD, you may want to speak with a genetic counselor about your pregnancy ... Read more

June 10, 2020June 10, 2020

Clinical Trials for Adrenoleukodystrophy

Health Insight

Developing treatments for rare diseases such as adrenoleukodystrophy (ALD) is extremely challenging. The small number of patients worldwide makes it difficult for researchers to develop and test new treatments. One way ... Read more

June 1, 2020June 3, 2020

Adrenoleukodystrophy and Vision

Health Insight

Adrenoleukodystrophy (ALD) is a rare genetic disease that can lead to neurodegeneration (nerve cell death) and adrenal insufficiency, among other symptoms. However, symptoms vary widely between types of ALD. Cerebral ALD, ... Read more

May 26, 2020May 27, 2020

Seizures in Adrenoleukodystrophy and How to Deal with Them

Health Insight

Adrenoleukodystrophy (ALD) is a rare genetic disease characterized by the buildup of saturated very-long-chain fatty acids (VLCFAs) inside cells. When the disease affects the brain, as is most often does ... Read more

May 11, 2020May 20, 2020

Adrenoleukodystrophy: What Are the First Signs?

Health Insight

Some states in the U.S. test newborns for adrenoleukodystrophy (ALD). This often is the first indication to parents that their child may have ALD. However, there are different types of ... Read more

April 28, 2020April 29, 2020

What Is Newborn Screening and How Can It Help Identify Adrenoleukodystrophy?

Health Insight

Adrenoleukodystrophy (ALD) is a rare progressive neurological disorder. Children with the disease lack an ability to process very-long-chain fatty acids (VLCFAs) due to mutations in the ABCD1 gene. Their brain function ... Read more

April 20, 2020April 22, 2020

Speech Therapy for Children with Adrenoleukodystrophy

Health Insight

Adrenoleukodystrophy (ALD) is a genetic disorder that affects the nerves and the adrenal glands. Your child may have difficulty speaking and swallowing. Some children with ALD are also troubled by ... Read more

April 13, 2020April 21, 2020

Tips for Dealing with Hearing Loss in Adrenoleukodystrophy

Health Insight

Adrenoleukodystrophy (ALD) is a severe heritable disorder that primarily affects males. Symptoms can appear early in life. The tissues most affected are nerves and adrenal glands. One symptom that some ... Read more

April 7, 2020April 8, 2020

Schooling Your Child With Adrenoleukodystrophy

Health Insight

If you are the parent of a child with a rare disease such as adrenoleukodystrophy (ALD), managing your child’s schooling and their disease can be challenging but can done well ... Read more

March 12, 2020March 13, 2020

Dealing with Bowel Dysfunction in Adrenoleukodystrophy

Health Insight

Bowel dysfunction is the term given to problems with passing stool, which can lead to fecal incontinence (an inability to control bowel movements) due to diarrhea, constipation, or nervous system damage. ... Read more