What is Wolf Hirschhorn Syndrome?
WHEN WAS WOLF HIRSCHHORN SYNDROME FIRST RECOGNISED?
In 1964 it was first recognised by two German Geneticists by the names of Wolf and Hirschhorn. The oldest known person with Wolf Hirschhorn Syndrome in the United Kingdom was born in the UK in 1962.
IS WOLF HIRSCHHORN SYNDROME HEREDITARY?
Yes, if one or both parents have translocated chromosomes. It is not only transmitted this way, it can occur spontaneously during conception.
WHAT IS A GENETIC DISORDER?
Wolf Hirschhorn Syndrome is a rare genetic disorder. We all have 23 pairs of chromosomes in every cell in our body. One chromosome of each pair is passed down from our mother and the other from our father. The top portion of the chromosome is called “p” and the bottom “q”. Persons with Wolf Hirschhorn Syndrome have all or part of the “p” section of the 4th chromosome missing. This consequently results in the alternative name of 4p-.
IS THERE A CURE?
There is no known cure. There is nothing anyone can do to prevent Wolf Hirschhorn Syndrome from occurring.
CAN TESTS BE CARRIED OUT TO DETECT WOLF HIRSCHHORN SYNDROME?
Tests can sometimes be carried out during pregnancy, but the risks of miscarriage or damage are very high. A simple blood test after birth can usually diagnose the disorder.
CARE
Persons with Wolf Hirschhorn Syndrome require care on a 24-hour basis. Providing this care is extremely demanding on parents/carers and, although rewarding, can be very stressful.
THE NEED
To achieve our aim, the Trust desperately needs funds to provide specialist equipment for persons with Wolf Hirschhorn Syndrome as well as printing costs involved in providing practical; advice, booklets and informative literature.
HOW IS DEVELOPMENT AFFECTED?
Every person with Wolf Hirschhorn Syndrome has unique characteristics, although they do have a number of similar features. There are no two cases alike. The most common characteristics/features are:
Growth retardation – weight gain difficult.
Lax muscle tone.
Recurrent respiratory infections.
Seizures/convulsions.
Small birth weight.
Hypospadias in males.
Feeding problems – some persons are fed by nasal gastric or gastrostomy tube in liquid form. Others cannot chew.
Mild to profound developmental delay both physically and mentally – progress very slow.
Long slender bodies and limbs.
Cleft lip and palate.
Heart problems.
Communication difficulties.
Little or no speech
IS WOLF HIRSCHHORN SYNDROME HEREDITARY?
Yes, if one or both parents have translocated chromosomes. It is not only transmitted this way, it can occur spontaneously during conception.
WHAT IS A GENETIC DISORDER?
Wolf Hirschhorn Syndrome is a rare genetic disorder. We all have 23 pairs of chromosomes in every cell in our body. One chromosome of each pair is passed down from our mother and the other from our father. The top portion of the chromosome is called “p” and the bottom “q”. Persons with Wolf Hirschhorn Syndrome have all or part of the “p” section of the 4th chromosome missing. This consequently results in the alternative name of 4p-.
IS THERE A CURE?
There is no known cure. There is nothing anyone can do to prevent Wolf Hirschhorn Syndrome from occurring.
CAN TESTS BE CARRIED OUT TO DETECT WOLF HIRSCHHORN SYNDROME?
Tests can sometimes be carried out during pregnancy, but the risks of miscarriage or damage are very high. A simple blood test after birth can usually diagnose the disorder.
CARE
Persons with Wolf Hirschhorn Syndrome require care on a 24-hour basis. Providing this care is extremely demanding on parents/carers and, although rewarding, can be very stressful.
THE NEED
To achieve our aim, the Trust desperately needs funds to provide specialist equipment for persons with Wolf Hirschhorn Syndrome as well as printing costs involved in providing practical; advice, booklets and informative literature.
HOW IS DEVELOPMENT AFFECTED?
Every person with Wolf Hirschhorn Syndrome has unique characteristics, although they do have a number of similar features. There are no two cases alike. The most common characteristics/features are:
Growth retardation – weight gain difficult.
Lax muscle tone.
Recurrent respiratory infections.
Seizures/convulsions.
Small birth weight.
Hypospadias in males.
Feeding problems – some persons are fed by nasal gastric or gastrostomy tube in liquid form. Others cannot chew.
Mild to profound developmental delay both physically and mentally – progress very slow.
Long slender bodies and limbs.
Cleft lip and palate.
Heart problems.
Communication difficulties.
Little or no speech