Travel for Adrenoleukodystrophy

Adrenoleukodystrophy (ALD) refers to a number of hereditary disorders that affect adrenal glands and the nervous system. The main types of ALD are adrenomyelopathy, childhood cerebral ALD and Addison’s disease.

The gene that is responsible for causing ALD was singled out in 1993. The frequency of the condition is approximated at one in 20,000 to 50,000 individuals according to the Oncofertility Consortium and affects mainly males. Female affected by this condition are usually asymptomatic or slightly symptomatic. This means that they experience little or no symptoms. The signs and symptoms, treatment options and prognosis of this condition differ with the type of the disease. Although ALD cannot be cured, doctors can slow its progress.

There are many healthcare facilities in the United States where patients can seek treatments for ALD. However, patients need to travel to these hospitals. Many insurance plans cover medical treatments but not travel expenses. This means that patients and their loved ones should pan wisely to keep travel expenses down.

If you are already set for the hospital that you want to go for Adrenoleukodystrophy treatment, consultation or second opinion, you should go ahead and plan your travel. Otherwise, you can check our list of healthcare facilities that offer treatments for ALD in the country. In case you are unable to meet travel expenses on your own, you can check our directory of charitable organizations that help in arranging cost-free travel for treatment purposes.

About Adrenoleukodystrophy

ALD is the most common leukodystrophy and accounts for nearly half of all leukodystrophies. There are three main types of this condition. These are;

  1. Childhood cerebral ALD. This mainly affects children between three and 10 years of age. It progresses very quickly and causes serious disability and also death. The signs and symptoms of this type of ALD include the following;
  • coma
  • crossed eyes
  • deterioration of fine motor control
  • hyperactivity
  • impaired vision
  • loss of hearing
  • muscle spasms
  • paralysis
  • seizures
  • trouble swallowing
  • trouble with language comprehension
  1. This largely affects adult males. It is not as severe as childhood cerebral ALD and progresses comparably slowly. Signs and symptoms of this type of disorder include the following;
  • difficulty thinking and remembering visual perceptions
  • poor control of urination
  • stiffness in the legs
  • weak muscles
  1. Addison’s disease. This is also referred to as adrenal insufficiency. It occurs when adrenal glands fail to make enough hormones.

Where to Go for Adrenoleukodystrophy Treatment

There are quite a number of hospitals in the United States where patients and their families can access Adrenoleukodystrophy treatments. These hospitals have the necessary equipments, technology, doctors, support staff and medications that make it possible for them to provide comprehensive and specialized healthcare services. Among the leading hospitals in the treatment and care for Adrenoleukodystrophy include the following;

  • Mayo Clinic

Doctors in this facility are trained in treating kids who have brain and nervous system disorders (pediatric neurologists), doctors trained in brain and nervous system disorders (neurologists), and others with experience diagnosing and treating patients with Adrenoleukodystrophy and other neurological disorders.

Treatment of Adrenoleukodystrophy

Due to the fact that the symptoms of this disorder can manifest in similar manner with other illnesses, particular tests are required in order to distinguish it from the rest. The doctor may recommend the following blood tests;

  • check your adrenal glands
  • find the genetic mutation that causes ALD
  • look for abnormally high levels of VLCFAs

The doctor may also check any damages to the brain using MRI scan. To test for VLCFAs, biopsy, skin samples and fibroblast cell culture can also be used. Children suspected with ALD may require more tests that may include vision screens.

Treatment options largely depend on the type of ALD that the patient is suffering from. Addison’s disease can be treated using steroids. The other types of ALD have no particular treatment methods. Although the treatment options for ALD are limited, the following can be used;

  • Lorenzo’s Oil

Lorenzo’s Oil as a therapy for boys with ALD has been used successfully. This oil can be used to prevent the child from risks of developing childhood cerebral ALD if started early. Together with diet low on fat, this oil can be used to assist in the reduction of very long chain fatty acids that builds up.

  • Bone Marrow Transplant

Bone marrow transplant is a treatment option for boys with early signs of ALD. With early interventions, successful transplants are possible, although the procedure is considered risky. According to statistics, only about 30 percent of boys who undergo bone marrow transplant develop childhood cerebral ALD. Presently, this treatment option is not considered viable to adults; the risks involved outweigh the benefits expected.

  • Exercise and Physical Therapy

Those patients with walking difficulties may see a physical therapist for exercises aimed at strengthening the muscles and improving mobility.

Risks Associated with Adrenoleukodystrophy

The Adrenoleukodystrophy protein (ALDP) assists the body to break down very long chain fatty acids (VLCFAs). Individuals suffering from this disorder have mutations in the gene responsible for making ALDP. If this protein fails to function, the body experiences build up of fatty acids. This build up can damage the outer layer of cells in the following body organs and tissues;

  • adrenal glands
  • brain
  • spinal cord
  • testes

The reason why this condition affects more and manifests more severely in males compared to females is because it is inherited in an X-linked manner. The offending mutation is on the X chromosome. Males only have one X chromosome while females have two. This means females can have one normal gene and a copy with the offending mutation.

Who Can Go for Adrenoleukodystrophy Treatment

Due to the fact that ALD is a hereditary disorder, there is no way that it can be prevented. However, there are those individuals that should go for screening to rule out the possibility of passing the condition to their young ones. A female with family history of ALD or other genetic disorders should go for genetic counseling before having a child. When already expectant, chronic villus sampling or amniocentesis can be done to check whether the unborn child is affected. Additionally, people experiencing signs and symptoms of ALD should seek medical intervention immediately.