| Acoustic Neuromas - tumors of the nerves that
lead from the ears to the brain which enable a person to hear. These tumors
may grow and result in a hearing loss.
Audiometry -
Functional testing of a person's hearing done by exposing
each individual ear to various sounds in a soundproof room.
Autosomal dominant -
Pattern of inheritance in which one half of an
affected person's children are also affected without regards to sex of the
child or parent. Autosomal refers to the fact that the genetic information
for the disease lies on a non-sex chromosome. Dominant refers to the fact
that only one piece of genetic information (out of the two which are
received at conception) need be affected by the disease.
Biopsy - removal of tissue from the body to be
examined under a microscope. The purpose is usually to deter- mine the cause
of the disorder. Sometimes a biopsy is done to determine if someone has NF.
Cafe-au-lait Spot - patches on the skin that
are the color of coffee with milk. Kids with NF have 6 or more cafe-au-lait
spots.
Cancer -
An abnormal and uncontrolled growth of cells which
invades the surrounding tissues, spreads to other parts of the body, and
recurs and causes death if not completely treated.
Cataract -
Clouding of the lens of the eye. If not treated, cataracts may cause
blindness by blocking light rays from entering the eye.
CAT Scan - Computed Axial Tomography-this test
pro- vides highly accurate information about body and brain structures.
X-ray beams are sent through the body in many directions from a source that
encircles the body. The resultant x-ray beams are detected on the other side
of the patient by sensors that transmit the information by a computer. After
hundreds of individual beams have been received, the computer is asked to
analyze and draw a picture. This test is helpful in locating tumors or other
abnormal structures.
Cell - the basic unit of all organisms.
Central Nervous System (CNS) - the brain and
nerves of the spinal cord. The system is central because all of the nerves
of the body, except the cranial nerves which connect directly with the
brain, enter or leave the spinal cord.
Chromosome - that part of the nucleus of a
cell which contains the genes.
Dermal - related to the skin.
Diagnosis - the identification of a disease or
disorder. Sometimes the signs and symptoms tell the diagnosis. Sometimes lab
tests and x-rays also help.
Disseminated - scattered or distributed over a
considerable area of the body.
Dominant - dominant is used to indicate the
stronger gene in a pair. It is the gene whose message will be obeyed to
produce a particular characteristic.
Elephant Man - John Merrick was a man who lived
In London. England in the 1880's who had NF among other disorders. He had
the worst case of NF ever known and was very deformed. His story was the
basis of the play and movie. The Elephant Man. Doctors now think that John
Merrick had other problems and people with NF do not have to be concerned
about developing that degree of deformity.
Ependymoma
- Tumor which grows from cells which line the cavities of the brain and
spinal cord.
Fibroma - a fibrous, connective tissue tumor.
Gamma Knife -
Form of highly focused radiation therapy.
Gene - the biological unit of heredity. Genes
determine the structure and function of all proteins in the body. In turn,
these proteins govern body shape and function.
Heredity - the process of passing on
characteristics and traits from parent to child.
Learning Disability - when a person has an
average or above intelligence but has difficulty in processing information.
Magnetic Resonance Imaging
- Method of visualizing the internal structures of
the body by exposing the tissues to magnetic fields and measuring their
response. MRI produces highly detailed pictures of the anatomy of the body
and is especially useful for visualizing the brain. MRI produces no
functional information on the area scanned.
Meningioma -
Tumor which grows from the cells which line the brain and spinal cord in
protective sheets called meninges.
Mutation - a change in a gene that occurs by
chance; it can be passed on to future generations.
Neurofibroma - a tumor composed of nerve, blood
vessel and fibrous tissue.
Neuroma - tumor derived from nerve cells.
Peripheral - situated away from the center of
the central nervous system, toward the surface of the body.
Physician - a person who has successfully
completed the prescribed course of studies in medicine in a recognized
medical school and who has met the qualifications for licensure In the
practice of medicine. Some of the physicians you may come to know are listed
below:
- Dermatologist - A doctor who specializes in
diseases of the skin. Because NF affects the skin, this specialist often
sees people with NF.
- Family Practitioner - A doctor in general
practice whose extended education and practice qualifies him for
certification as a family practitioner. This doctor may serve as the
"general contractor" coordinating your care with oother specialists.
- Neurologist - A doctor who treats diseases or
disorders of the nervous system. A neurologist is the specialist with a
special interest in NF and who offers specialized care.
- Ophthalmologist - A doctor specializing In
medical and surgical care of the eyes.
- Orthopedist - sometimes called orthopods; this
physician specializes in prevention and correction of disorders involving
the skeleton.
- Otorhinolaryngologist - a doctor who
specializes in diseases of the ears, nose, and throat; he's the one they
call "the E-N-T man."
- Pediatrician - A doctor who specializes in the
care of infants and children, usually until the age of sixteen.
- Plastic Surgeon - A doctor who performs surgery
for the restoration, repairer reconstruction of body structure.
Plastic Surgery - surgery for the repair, reconstruction or
restoration of body structures.
Plexiform Neurofibroma - a network of tumors
which occur internally below the skin.
Prognosis - a forecast or prediction of the
outcome of the course and duration of an illness based on the best
information the doctor has to make a judgment.
Prosthesis - replacement of a body part. It may
be a plastic eye or part that replaces a damaged organ like an arm or leg.
Pseudarthrosis - failure of a fracture to heal,
resulting in a "false joint."
Psychologist - an individual who has a Ph.D.
degree from a recognized university. A psychologist administers intelligence
and achievement tests as well as giving guidance and counseling in dealing
with everyday problems.
Puberty - the medical name for the process of
changing from a child to an adult.
Radiation therapy -
Form of treatment in which the tumor cells are exposed to
controlled doses of X-ray irradiation. Although tumor cells are especially
susceptible to irradiation, surrounding tissues will also be damaged.
Radiation therapy rarely cures a tumor by itself, but may be a useful tool
when used in conjunction with other forms of therapy, or when a patient can
no longer tolerate other forms of therapy.
Scoliosis - is a condition that affects the
curve of the spine. It is the most common orthopedic problem that children
with NF have.
Schwannoma
- Tumor which grows from cells which line the nerves of the body. These
cells, called Schwann cells, not only protect the nerves but also provide
them with the insulation they need to conduct electrical impulses to and
from the brain.
Sign - any evidence of disease or disorder seen
by the doctor.
Spontaneous - occurring without apparent cause.
Surgery - branch of medicine dealing with
procedures for correction of deformities, defects, repair. Surgery is
usually done in an operating room when you are asleep.
Symptom - any evidence of sickness perceived by
patient, which cannot be seen or felt by the doctor.
Tinnitus
- Ringing in the ears.
Tissue - group of cells, of one or several
kinds, that make up body material such as skin, bone, blood or muscle.
Tumor - an abnormal excess growth of tissue.
Tumors may be malignant, in which case they are called cancers, or
nonmalignant. Non-malignant tumors do not aggressively invade
surrounding tissues or spread to other parts of the body, but they may cause
significant symptoms and even death depending on their location.
Von Recklinghausen's Disease - another name for
Neurofibromatosis.
X-rays - This is a test which uses a very
high-energy non-visible light, capable of penetrating soft body tissue. It
lets the doctor look inside your body and is used both in diagnosis and
therapy.
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