How long do you live with INAD?
For the first few years, a baby with INAD will be alert and responsive, despite being increasingly physically impaired. Eventually, because of deterioration in vision, speech, and mental skills, the child will lose touch with its surroundings. Death usually occurs between the ages of 5 to 10 years.
How many kids have INAD in the US?
Both children have a rare, terminal illness called Infantile Neuroaxonal Dystrophy. It is a genetic disease and both parents are carriers but until their children began showing signs of it, never knew. Only 16 kids in the U.S. have this extremely rare and life- threatening illness.
How does INAD cause death?
Many children with INAD do not live beyond age 10, but some do survive into their teens and early twenties. Death usually occurs due to secondary problems, such as aspiration pneumonia or other infections.
Is INAD hereditary?
INAD is an autosomal recessive disease. This means that individuals must have two copies of the altered gene, one received from the mother and the other from the father. If an individual receives one normal gene and one affected gene, the person will become a carrier for the condition but not affected with it.
What causes death in INAD?
Many children with INAD do not live beyond age 10, but some do survive into their teens and early twenties. Death usually occurs due to secondary problems, such as aspiration pneumonia or other infections. The symptoms of aNAD are more variable than those of INAD with symptoms developing usually by 4 years of age.
Does INAD cause pain?
The condition is not a painful one and the child will be unaware of what is happening in the later stages of the disease.
Can you test for INAD before birth?
Amniocentesis is a diagnostic test. It usually is done between 15 weeks and 20 weeks of pregnancy, but it also can be done up until you give birth. To perform the test, a very thin needle is used to withdraw a small amount of amniotic fluid. Ultrasound is used to guide the procedure.