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Life & Hope
Adrenoleukodystrophy
Research
The NINDS supports research on disorders like ALD
Studies are done to identify biomarkers that predict the onset of ALD.
A recent case study in Europe showed that gene therapy and bone-marrow transplant may stop the disease from progressing.
The Food and Drug administration is starting to discuss on treatments.
Cure
ALD has no cure.
A possible treatment is called Lorenzo's Oil but it has not been proven to cure the disease.
By Gender
Lorenzo's oil has been found to decrease VLCFAs in the blood, but it is ineffective in ALD treatment.
30-35% of males have the child cerebral form with an onset at the latest at 10 years old. 4-7% onset by 21 years old called adolescent cerebral.
Lorenzo's oil has been found to reduce platelet count in the blood.
40-46% of males develop Adrenomyelineuropathy by their late 30s and 2 in 5 have the adult cerebral form.
Most women live asymptomatic until their late 30s.
40% of women 40+ years old develop AMN. 15% of women 40+ develop can develop the cerebral form.
Those who have the cerebral form enter a vegetative state about 10 years from onset
Lifestyle
JORDAN CEVALLOS
A diet that is low in very long fatty acid chains simply called VLCFAs has been recommended.
Possible treatment with adrenal hormone replacement.
Physiotherapy can be helpful for AMN patients
Special help at school is useful.
Most Common
Symptoms
- Abnormal Withdrawal
- Aggression
- Poor Memory
- Poor School Performance
- Fatigue
- Progressive Dementia
- Visual Loss
- Seizures
- Neuropathy
- Paraplegia
- Adrenal Gland Failure
Addison Type
Detection
A Short Clip
Genetic testing.
Elevated VLCFA levels in the blood.
MRI testing for white abnormalities
Lorenzo's Oil
Inheritance & Condition
Media
Barry L.
References
Genetics
- X-Linked Recessive
- "Adrenoleukodystrophy." Diagnosis. N.p., n.d. Web. 10 Dec. 2012.
- BBC News. BBC, 21 July 2004. Web. 10 Dec. 2012.
- Board, A.D.A.M. Editorial. Adrenoleukodystrophy. U.S. National Library of Medicine, 18 Nov. 0000. Web. 10 Dec. 2012.
- "Current ALD Research." Current Therapies. N.p., n.d. Web. 10 Dec. 2012.
- "NINDS Adrenoleukodystrophy Information Page." Adrenoleukodystrophy Information Page: National Institute of Neurological Disorders and Stroke (NINDS). N.p., n.d. Web. 10 Dec. 2012.
- Mutation in ABCD1 Gene
- 7 Phenotypes in Males, 5 in Females