Health Insight

December 16, 2020December 16, 2020

Adrenoleukodystrophy and Exercise

Health Insight

Many patients with the adult form of adrenoleukodystrophy (ALD), called adrenomyeloneuropathy (AMN), experience weakness and stiffness in their leg muscles, leading to trouble walking. A careful exercise plan may ... Read more

December 9, 2020December 9, 2020

The ALD National Registry

Health Insight

Adrenoleukodystrophy (ALD) is a rare genetic disorder affecting around one in 21,000 males in the U.S. Researchers think that one in 16,800 women are carriers (have a copy of ... Read more

December 2, 2020December 2, 2020

Individualized Education Plan (IEP) for Children With Adrenoleukodystrophy

Health Insight

When adrenoleukodystrophy (ALD) occurs in children, it is called childhood cerebral ALD or CALD, and it leads to serious neurological disorders. Children with CALD may experience learning and behavioral ... Read more

November 25, 2020November 25, 2020

Tips for Dealing With Fatigue When You Have ALD

Health Insight

Fatigue is a common symptom for patients with chronic diseases such as adrenoleukodystrophy (ALD). Fatigue can be defined as extended periods of exhaustion leading to a lack of energy ... Read more

November 11, 2020November 11, 2020

Medications With No Clear Benefit for Adrenoleukodystrophy

Health Insight

A number of medications have been proposed as treatment options for adrenoleukodystrophy (ALD) and have had promising starts. However, further investigation in clinical trials showed a lack of benefit ... Read more

November 4, 2020November 4, 2020

Treatment Plan for Adrenoleukodystrophy

Health Insight

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 ... Read more

October 28, 2020October 28, 2020

Planning for the Future When Your Child Has Adrenoleukodystrophy

Health Insight

You were likely prepared to hear your child was ill, but a diagnosis of a rare and progressive disorder like adrenoleukodystrophy (ALD) could still come as a shock. Among next steps you ... Read more

October 21, 2020October 21, 2020

Just Diagnosed With Adrenoleukodystrophy, Now What?

Health Insight

A new diagnosis of a rare genetic disorder such as adrenoleukodystrophy (ALD) for your child or yourself can be frightening. Here is some information that may be helpful in ... Read more

October 14, 2020October 14, 2020

Independent Living for Adults With Adrenoleukodystrophy

Health Insight

Having a chronic condition such as adrenoleukodystrophy (ALD) can be particularly concerning if you are living alone. But there are steps you can take to help you live well and independently. Learn ... Read more

October 7, 2020October 7, 2020

Adrenoleukodystrophy and Sexuality

Health Insight

Adrenoleukodystrophy (ALD) and its adult-onset form, adrenomyeloneuropathy (AMN), can have both direct and indirect effects on a person’s sexuality. The following information may be useful as you manage this ... Read more