Health Insight

September 9, 2020September 9, 2020

Raising Awareness of Adrenoleukodystrophy

Health Insight

Rare diseases like adrenoleukodystrophy (ALD) are not well-known and often misdiagnosed. Raising awareness could help lead to better diagnosis and more research into potential treatments. Here is some information about ... Read more

September 2, 2020September 2, 2020

Seizure Monitors for Adrenoleukodystrophy

Health Insight

Seizures are a common symptom of cerebral adrenoleukodystrophy, especially as the disease progresses. Using seizure monitors can help you manage, and possibly better treat your child’s condition. What is ALD? Adrenoleukodystrophy (ALD) ... Read more

August 26, 2020August 26, 2020

Seizure Diaries for Adrenoleukodystrophy

Health Insight

Seizures are a common symptom of childhood cerebral adrenoleukodystrophy (CALD), especially as the disease progresses. Rare cases of seizures in people with adult-onset adrenoleukodystrophy (ALD) also have been reported. If ... Read more

August 19, 2020September 15, 2020

Female Carriers of Adrenoleukodystrophy

Health Insight

If you are a woman who has a family member diagnosed with adrenoleukodystrophy (ALD), you may be wondering if you are a carrier of the disease. You may find the following ... Read more

August 5, 2020August 5, 2020

Medical Alert Cards for Adrenoleukodystrophy

Health Insight

Depending on the type of disease you have or your child has, adrenoleukodystrophy (ALD) can lead to an adrenal crisis or to sudden symptoms like seizures and low blood pressure. ... Read more

July 29, 2020July 29, 2020

Mindfulness for ALD Caregivers

Health Insight

Providing constant care for a patient with a chronic disease, such as adrenoleukodystrophy, can be emotionally draining and stressful. However, a practice called mindfulness may help caregivers to cope with ... Read more

July 22, 2020July 22, 2020

About ALD Connect

Health Insight

If you or a family member has adrenoleukodystrophy (ALD), then one resource you may want to use is ALD Connect. What is ALD Connect? A group of clinicians, scientists, patients, ... Read more

July 15, 2020July 15, 2020

Preimplantation Genetic Diagnosis for Adrenoleukodystrophy

Health Insight

If you and your partner are both carriers for adrenoleukodystrophy (ALD), or if one of you has a type of ALD (such as adrenomyeloneuropathy (AMN) or Addison’s disease), you may be ... Read more

July 8, 2020July 8, 2020

Prenatal Genetic Diagnosis for Adrenoleukodystrophy

Health Insight

If you know that you and your partner are carriers of adrenoleukodystrophy (ALD) and risk passing the disease to your children, you may be considering a prenatal genetic diagnosis. What ... Read more

July 1, 2020July 1, 2020

What to Expect of a Physiotherapy Session for ALD Patients

Health Insight

Physiotherapy can be helpful to people with adrenoleukodystrophy (ALD), a rare genetic disease characterized by a buildup of toxic fatty molecules within cells. While there is currently no cure for ALD, ... Read more