What is ALD disease?

Adrenoleukodystrophy (ALD) is a genetic condition that damages the membrane (myelin sheath) that covers nerve cells in the brain and spinal cord. Myelin acts as insulation around the nerve fibers.

What is the life expectancy of someone with ALD?

Outlook (Prognosis) The childhood form of X-linked adrenoleukodystrophy is a progressive disease. It leads to a long-term coma (vegetative state) about 2 years after nervous system symptoms develop. The child can live in this condition for as long as 10 years until death occurs.

What is ALD in pregnancy?

Adrenoleukodystrophy (ALD) occurs when certain fats (very long chain fatty acids, or VLCFAs) cannot be broken down in the body. These fats build up and affect how the body normally functions. This disease largely affects the nervous system and adrenal glands.

What does ALD stand for hearing?

An Assistive Listening Device (ALD) is any device that helps you overcome your hearing loss. Usually the term ALD is applied to personal devices that transmit, process, or amplify sound, but usually not used to refer to hearing aids. Term may also refer to alerting devices. The example shown is a typical FM receiver.

Can you prevent ALD?

Because ALD is an inherited condition, there’s no way to prevent it. If you’re a woman with a family history of ALD, your doctor will recommend genetic counseling before you have children.

Is ALD painful?

Some people experience a variety of symptoms such as pain, numbness or tingling in the legs, mild to moderate weakness of the arms and hands, urinary and bowel disturbances or incontinence and walking and balance problems. These problems begin as a general leg weakness and stiffness and progress to walking difficulty.

How is ALD treated?

The only effective treatment option for cerebral ALD is a stem cell transplant, a procedure in which the patient receives blood stem cells from a genetically matched donor. The purpose is to provide healthy stem cells that produce the protein lacking in boys with ALD.

How common is ALD?

According to the Oncofertility Consortium, ALD occurs in about 1 in 20,000 to 50,000 people and mainly affects men.

Are newborns tested for ALD?

The state began testing newborns for ALD in September 2016 — seven months after the federal government added it to the list of recommended screenings. The testing in California included all babies born after February of that year.

Can ALD be cured?

Adrenoleukodystrophy has no cure. However, stem cell transplantation may stop the progression of ALD if done when neurological symptoms first appear. Doctors will focus on relieving your symptoms and slowing disease progression.

What is ALD when a baby is born?

What is adrenoleukodystrophy? Adrenoleukodystrophy (ALD) is a rare genetic condition that causes the buildup of very long chain fatty acids (VLCFAs) in the brain. When VLCFAs accumulate, they destroy the protective myelin sheath around nerve cells, responsible for brain function.

Can a girl get ALD?

Women with ALD can experience symptoms similar to men with AMN later in life. Symptoms vary in women, but many times include bowel and bladder dysfunction, pain in the extremities, and walking difficulties. Cerebral disease and adrenal insufficiency are rare in women with ALD, so symptom management is key.