Question: adrenoleukodystrophy A child I have been asked to work with has been diagnosed with this condition.I am so far unable to find info pertaining to this illness. Can you help??

Reference:
 Adrenoleukodystrophy X-linked Adrenoleukodystrophy Adrenomyeloneuropathy Childhood cerebral adrenoleukodystrophy ALD Schilder-Addison Complex Summary Adrenoleukodystrophy describes several closely related disorders that disrupt the breakdown of certain fats. These disorders are passed down (inherited) in families. Causes Adrenoleukodystrophy is usually passed down from parent to child as an X-linked genetic trait. It affects mostly males. Some women who are carriers can have milder forms of the disease. It affects about 1 in 20,000 people from all races. The condition results in the buildup of very-long-chain fatty acids in the nervous system, adrenal gland, and testes. This disrupts normal activity in these parts of the body. There are three major categories of disease: Childhood cerebral form -- appears in mid-childhood (at ages 4 to 8) Adrenomyelopathy -- occurs in men in their 20s or later in life Impaired adrenal gland function (called Addison disease or Addison-like phenotype) -- adrenal gland does not produce enough steroid hormones Symptoms Childhood cerebral type symptoms include: Changes in muscle tone, especially muscle spasms and uncontrolled movements Crossed eyes Handwriting that gets worse Difficulty at school Difficulty understanding what people are saying Hearing loss Hyperactivity Worsening nervous system damage, including coma, decreased fine motor control, and paralysis Seizures Swallowing difficulties Visual impairment or blindness Adrenomyelopathy symptoms include: Difficulty controlling urination Possible worsening muscle weakness or leg stiffness Problems with thinking speed and visual memory Adrenal gland failure (Addison type) symptoms include: Coma Decreased appetite Increased skin color Loss of weight and muscle mass (wasting) Muscle weakness Vomiting Exams and Tests Tests for this condition include: Blood levels of very long chain fatty acids and hormones that are produced by the adrenal gland Chromosome study to look for changes (mutations) in the <em>ABCD1</em> gene MRI of the head Skin biopsy Treatment Adrenal dysfunction may be treated with steroids (such as cortisol) if the adrenal gland is not producing enough hormones. A specific treatment for X-linked adrenoleukodystrophy is not available. A bone marrow transplant can cure a people of the condition. Supportive care and careful monitoring of impaired adrenal gland function may help in improving comfort and quality of life. Support Groups The following resources can provide more information on adrenoleukodystrophy: National Organization for Rare Disease Disorders -- rarediseases.org/rare-diseases/adrenoleukodystrophy NIH/NLM Genetics Home Reference -- ghr.nlm.nih.gov/condition/x-linked-adrenoleukodystrophy 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. The other forms of this disease are milder. Possible Complications These complications can occur: Adrenal crisis Vegetative state When to Contact a Medical Professional Call your health care provider if: Your child develops symptoms of X-linked adrenoleukodystrophy Your child has X-linked adrenoleukodystrophy and is getting worse Prevention Genetic counseling is recommended for couples with a family history of X-linked adrenoleukodystrophy. Mothers of affected sons have an 85% chance of being a carrier for this condition. Prenatal diagnosis of X-linked adrenoleukodystrophy is also available. It is done by testing cells from chorionic villus sampling or amniocentesis. These tests look for either a known genetic change in the family or for very long chain fatty acid levels. Review Date 10/26/2017 Updated by: Anna C. Edens Hurst, MD, MS, Assistant Professor in Medical Genetics, The University of Alabama at Birmingham, Birmingham, AL. Review provided by VeriMed Healthcare Network. Also reviewed by David Zieve, MD, MHA, Medical Director, Brenda Conaway, Editorial Director, and the A.D.A.M. Editorial team. 

Answer: Adrenoleukodystrophy is usually passed down from parent to child as an X-linked genetic trait. It affects mostly males, although some women can have milder forms of the disease. The genetic mutation causes buildup of very-long-chain fatty acids in the nervous system, adrenal gland, and testes, which disrupts their normal activity.  Childhood cerebral form  appears at ages 4 to 8. Its symptoms include changes in muscle tone, muscle spasms and uncontrolled movements, crossed eyes, difficulty at school, difficulty understanding what people are saying, hearing loss, and hyperactivity. Worsening nervous system damage, may include coma, decreased fine motor control, and paralysis, seizures, swallowing difficulties, visual impairment or blindness.  A long-term coma (vegetative state) could start about 2 years after nervous system symptoms develop and last as long as 10 years, until death occurs.  A specific treatment for X-linked adrenoleukodystrophy is not available. A bone marrow transplant can cure people of the condition.