Wow – as we send out our medical professionals to find out about rare diseases, understanding them is difficult, but pronouncing this is a whole new beast! Fortunately it is more commonly known as ALD.
If this is our first blog you are reading, we like to get some medical professionals to do some research so we can understand and help you (as a parent or a friend of a family) to better understand what it is and more importantly, what communities can you be a part of.
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As a team, none of us ARE doctors; however we work with some amazing medical professionals that have given us more insight below. Please continue reading and use the information to navigate your own personal journey or share with anyone you may know may benefit.
Here are a few things that we DO know:
It is the most aggressive form which occurs in your child between the age of 4 and 10. The brain is damaged progressively which worsens over time and may lead to death within 10 years if not diagnosed early.
Symptoms might include:
It is also known as an adult-onset condition which appears in your children at early adulthood or at middle age between 21 to 35 years. In adversely affected individuals, the brain and nervous system damage can result in early death. The symptoms might include:
It is also called adrenal insufficiency, which occurs in your child when the adrenal glands do not make sufficient hormones. It occurs at any time during childhood or adulthood. The symptoms include:
The diagnosis is usually based clinical evaluation, biochemical tests, and the family history
The only effective treatment is stem cell transplant. The adrenal hormones treatment could also be lifesaving. Patients with X-ALD are usually offered symptomatic care. However, the administration of Lorenzo’s Oil which is the erucic acid and oleic acid mixture has been proven to delay or prevent the cerebral condition in children.
The childhood cerebral X-ALD has poor prognosis until the stem cell therapy is carried out. Death usually occurs due to progressive neurological decline usually within 1 to 10 years of age.
As it is an X linked disorder, your male children are at most risk of getting the disease as compared to females because males have only one X chromosome. As females have two X chromosomes, they could carry the gene without having symptoms.