Adrenoleukodystrophy - How It Affects Only the Male Gender
Adrenoleukodystrophy is a rare inherited disorder that causes damage to the sheath that wraps around the nerve cells in the brain. The common form of this disease is known as X-ALD, called as such because the abnormality involves the X chromosome. The X stands for the link where it is inherited from.
Women who have two X chromosomes are the carriers of the disease. Men who have only one X chromosome are severely affected by ALD. This is because they do not have the protective effect of the extra X chromosome.
Characteristics of the Disease
The affected area of this kind of disease is the nervous system, especially the white matter and the adrenal cortex. This usually starts in ages 4 and 8 years old. Possible signs that a person has X-ALD are the following:
- Hyperactivity of the child
- Progressive physical injuries
- Behavior Impairments
- Vision, hearing, and motor problems
- Paralysis or weakness of lower limbs
- Seizures
- Addison's disease
- Ataxia
These signs and symptoms could actually lead to permanent disability. It is best to have regular check-ups with your doctor once you notice something different about your child's actions. This disease is very much progressive over the decade. If you see the signs, visit the child's doctor immediately.
Managing the Disease
Therapy is very much needed in this kind of disease. One important therapy is the corticosteroid replacement therapy, which is very necessary for affected persons. For young boys who have been affected at a very young age, extensive support is very much needed from the parents. Physical therapy for older men could be performed in order to relieve complications. Also, vocational and psychological counseling are needed to uplift their self-worth and their self-esteem. Their educational needs must be supplied as well. Even if they have such disease, it does not mean that they do not have the right to learn and study just like any other normal people.
Implications
A person who has X-ALD does not need anything but acceptance, understanding, and love. They need to be in a good shape in order for them to understand and accept their situations. Normally, disabilities like this could cut off patience but the only people that can understand and love them the most are their family. If you are a parent with X-ALD, what can you do to lessen up your burdens and enjoy each moment with the affected person while he is still with you. Here are some tips to help you out:
- Know how to cheer up the person whether it is being asked or not.
- Learn to appreciate them, no one will.
- Love them with every hope you have in your heart.
Medical Treatment
There is currently no cure for the disease. However, dietary treatment may seem to decrease the rate of the disease. One method is the use of "Lorenzo's Oil" as portrayed in the movie of the same name. The oil is made from rapeseed and olive oil. Combine the oil with a diet low in very long chain saturated fatty acids. The method has shown limited success, especially before any symptoms appear.
Back>>
|