| 1 | | - | Enrolled August 20, 2018 Passed IN Senate August 16, 2018 CALIFORNIA LEGISLATURE 20172018 REGULAR SESSION Senate Resolution No. 119Introduced by Senator FullerJuly 02, 2018 Relative to Adrenoleukodystrophy Awareness Month LEGISLATIVE COUNSEL'S DIGESTSR 119, Fuller. Digest KeyBill TextWHEREAS, X-linked adrenoleukodystrophy (X-ALD) is one of a group of genetic disorders called the leukodystrophies that cause damage to the myelin sheath, an insulating membrane that surrounds nerve cells in the brain; andWHEREAS, Women have two X chromosomes and are the carriers of the disease, but men are most severely affected because men only have one X chromosome and lack the protection provided by an extra X chromosome; andWHEREAS, The loss of myelin and the progressive dysfunction of the adrenal gland are the primary characteristics of X-ALD; andWHEREAS, X-ALD affects an estimated one in 20,000 to 50,000 individuals worldwide, including boys like Jeremy Hill, Jr. of Bakersfield; andWHEREAS, While nearly all patients with X-ALD suffer from adrenal insufficiency, also known as Addisons disease, the neurological symptoms can begin either in childhood or adulthood; andWHEREAS, The childhood cerebral form is the most severe, with onset between four and 10 years of age; andWHEREAS, The most common symptoms are behavioral changes, including abnormal withdrawal or aggression, poor memory, and poor school performance; andWHEREAS, Other symptoms include visual loss, learning disabilities, seizures, poorly articulated speech, difficulty swallowing, deafness, disturbances of gait and coordination, fatigue, intermittent vomiting, increased skin pigmentation, and progressive dementia; andWHEREAS, The milder adult-onset form is known as adrenomyeloneuropathy (AMN), which typically begins between 21 and 35 years of age, and has symptoms that include progressive stiffness, weakness, or paralysis of the lower limbs, and ataxia; andWHEREAS, Almost one-half of the women who are carriers of X-ALD will develop a milder form of AMN, but almost never will develop symptoms seen in boys with X-ALD; andWHEREAS, Treatment with adrenal hormones can be lifesaving, and symptomatic and supportive treatments for X-ALD include physical therapy, psychological support, and special education; andWHEREAS, Newborn screening is effective in catching and preventing the negative effects of X-ALD and is relatively inexpensive; andWHEREAS, The prognosis for patients with childhood cerebral X-ALD is generally poor due to progressive neurological deterioration, unless bone marrow transplantation is performed early; andWHEREAS, Recent evidence suggests that a mixture of oleic acid and erucic acid, known as Lorenzos Oil, administered to boys with X-ALD prior to the onset of symptoms can prevent or delay, but not stop, the appearance of the childhood cerebral form of X-ALD; andWHEREAS, Death usually occurs between one and 10 years after the onset of symptoms of childhood cerebral X-ALD, and in adult-onset AMN deterioration will progress over decades; andWHEREAS, November, the month of Jeremy Hill, Jr.s birthday, was chosen to acknowledge the struggles of Jeremy Hill, Jr., his parents, Jeremy and Debra Hill, and his sister, Meagan Hill, in fighting X-ALD; now, therefore, be itResolved by the Senate of the State of California, That the Senate does hereby proclaim the month of November 2018 as Adrenoleukodystrophy Awareness Month in California; and be it furtherResolved, That the Secretary of the Senate transmit copies of this resolution to the author for appropriate distribution. |
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| 1 | + | CALIFORNIA LEGISLATURE 20172018 REGULAR SESSION Senate Resolution No. 119Introduced by Senator FullerJuly 02, 2018 Relative to Adrenoleukodystrophy Awareness Month. LEGISLATIVE COUNSEL'S DIGESTSR 119, as introduced, Fuller. Digest KeyBill TextWHEREAS, X-linked adrenoleukodystrophy (X-ALD) is one of a group of genetic disorders called the leukodystrophies that cause damage to the myelin sheath, an insulating membrane that surrounds nerve cells in the brain; andWHEREAS, Women have two X chromosomes and are the carriers of the disease, but men are most severely affected because men only have one X chromosome and lack the protection provided by an extra X chromosome; andWHEREAS, The loss of myelin and the progressive dysfunction of the adrenal gland are the primary characteristics of X-ALD; andWHEREAS, X-ALD affects an estimated one in 20,000 to 50,000 individuals worldwide, including boys like Jeremy Hill, Jr. of Bakersfield; andWHEREAS, While nearly all patients with X-ALD suffer from adrenal insufficiency, also known as Addisons disease, the neurological symptoms can begin either in childhood or adulthood; andWHEREAS, The childhood cerebral form is the most severe, with onset between four and 10 years of age; andWHEREAS, The most common symptoms are behavioral changes, including abnormal withdrawal or aggression, poor memory, and poor school performance; andWHEREAS, Other symptoms include visual loss, learning disabilities, seizures, poorly articulated speech, difficulty swallowing, deafness, disturbances of gait and coordination, fatigue, intermittent vomiting, increased skin pigmentation, and progressive dementia; andWHEREAS, The milder adult-onset form is known as adrenomyeloneuropathy (AMN), which typically begins between 21 and 35 years of age, and has symptoms that include progressive stiffness, weakness, or paralysis of the lower limbs, and ataxia; andWHEREAS, Almost one-half of the women who are carriers of X-ALD will develop a milder form of AMN, but almost never will develop symptoms seen in boys with X-ALD; andWHEREAS, Treatment with adrenal hormones can be lifesaving, and symptomatic and supportive treatments for X-ALD include physical therapy, psychological support, and special education; andWHEREAS, Newborn screening is effective in catching and preventing the negative effects of X-ALD and is relatively inexpensive; andWHEREAS, The prognosis for patients with childhood cerebral X-ALD is generally poor due to progressive neurological deterioration, unless bone marrow transplantation is performed early; andWHEREAS, Recent evidence suggests that a mixture of oleic acid and erucic acid, known as Lorenzos Oil, administered to boys with X-ALD prior to the onset of symptoms can prevent or delay, but not stop, the appearance of the childhood cerebral form of X-ALD; andWHEREAS, Death usually occurs between one and 10 years after the onset of symptoms of childhood cerebral X-ALD, and in adult-onset AMN deterioration will progress over decades; andWHEREAS, November, the month of Jeremy Hill, Jr.s birthday, was chosen to acknowledge the struggles of Jeremy Hill, Jr., his parents, Jeremy and Debra Hill, and his sister, Meagan Hill, in fighting X-ALD; now, therefore, be itResolved by the Senate of the State of California, That the Senate does hereby proclaim the month of November 2018 as Adrenoleukodystrophy Awareness Month in California; and be it furtherResolved, That the Secretary of the Senate transmit copies of this resolution to the author for appropriate distribution. |
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