Adrenoleukodystrophy – Treatment and Prevention of Adrenoleukodystrophy
Adrenoleukodystrophy (ALD) is a group of inherited disorders in which fatty covering of the nerve fibres is damaged progressively because of a faulty gene. Without this sheath, the nerves don’t function because when myelin sheath is damaged, the nerve signals are disrupted or either they slow down or stop completely. ALD can lead to muscle spasms, vision loss, disabilities, weakness and hearing loss.
Although specific treatment is not available for this X-linked adrenoleukodystrophy disorder but treatment is given to reduce the symptoms. They include:
- Most of the patients suffering from ADL may develop adrenal insufficiency where the adrenal glands does not function properly.
- This insufficiency may be treated with synthetic steroids.
- During times of stress or any injury or when they have infections, they may need medications.
- Some medications are given to relax the muscles and reduce tremors.
- Anti-convulsant medications may be administered to those patients who have seizures.
- Drugs to treat seizures should be given after consulting the physician.
- Other medications may be given to treat medical problems for ALD patients.
- Braces may be used for severe muscle spasms.
- These braces may prevent muscle contractures.
- Surgery may be done to loosen the tight muscles.
- This relieves muscle spasms and helps to reduce the pain.
- Surgery may be done to place feeding tubes.
- Stem cell transplant may be done to slow down the process of this disease if diagnosed and treated at an early stage.
- Exercises and stretching may help relieve muscle spasms and reduce rigidity of the muscles.
- Special devices like wheel chairs and other mobility devices can be used according to the comfort of the patient.
Vision and hearing checkups
- ADL may cause hearing and vision impairment.
- Treatment includes working with ophthalmologists and audiologists, who can provide auditory and visual aids for the patient.
- Genetic counseling is a communication process through which personal genetic information is provided to couples and families.
- Counseling is given on birth defects and genetic disorders along with supportive counseling.
- Connecting with families and making them aware of the right resources like support groups and specific types of clinics, nationally and locally.
- Prenatal genetic counseling may be given to a women who is over 35 years or older and pregnant.
- There is an increased chance that the baby may suffer from any of the genetic disorder.
- Counseling plays a very important role in prevention of such disorders.
Lorenzo oil is the only treatment which has shown slight improvement in boys who had no symptoms.This oil is a combination of fats extracted from rapeseed and olive oils.Researchers recommend that Lorenzo’s oil when taken in combination with a moderately low fat diet, is a good therapy for all boys with adrenoleukodystrophy.