Glossary
Impact on a child and their family
For children and their families, living with a serious medical condition affects every day of their lives. The children we serve at camp must take medicine at some point in their condition. Some of them take more than 10 different medications a day, some require shots, others receive infusions or need blood transfusions. Many of these children have had surgery, some have had transplants and now must take anti- rejections medications for the rest of their lives to ensure the well being of the transplanted organ. Almost all have spent time in the hospital. All have spent countless hours in their doctor's offices, undergoing tests, missing school and other social events with friends and family. All parents undergo a tremendous amount of stress caring for their child and everyone in the family is profoundly affected- the child, the parents and the siblings.
Asthma
A common disorder in which chronic inflammation of the bronchial tubes (bronchi) makes them swell, narrowing the airways. Asthma involves only the bronchial tubes and does not affect the air sacs (alveoli) or the lung tissue (the parenchyma of the lung) itself.
Autism
A spectrum of neuropsychiatric disorders characterized by deficits in social interaction and communication, and unusual and repetitive behavior.
Bereavement
The period after a loss during which grief is experienced and mourning occurs.
Burn survivors
Burns are classified based upon their depth. Regardless of the type of burn, inflammation and fluid accumulation in and around the wound occur. Moreover, it should be noted that the skin is the body's first defense against infection by microorganisms. A burn is also a break in the skin, and the risk of infection exists both at the site of the injury and potentially throughout the body.
Cancer
Cancer is not just one disease, but a large group of almost one hundred diseases. Its two main characteristics are uncontrolled growth of the cells in the human body and the ability of these cells to migrate from the original site and spread to distant sites.
Cerebral Palsy Cerebral
Cerebral Palsy (CP) is an abnormality of motor function (as opposed to mental function) and postural tone that is acquired at an early age, even before birth. Signs and symptoms of cerebral palsy usually show in the first year of life.
Craniofacial
Craniofacial malformations are some of the most common structural birth defects. They often are the result of genetic disorders and may be associated with developmental and functional abnormalities, such as abnormal brain growth, hearing loss, and difficulty with breathing, chewing, swallowing, and speech.
Crohn's Disease
Crohn's disease is an inflammation that extends into the deeper layers of the intestinal wall. It is found most often in the area bridging the small and large intestines, specifically in the ileum and the cecum, sometimes referred to as the ileocecal region.
Ulcerative colitis
Ulcerative colitis is an inflammatory disease of the large intestine. Ulcers form in the inner lining, or mucosa, of the colon or rectum, often resulting in diarrhea, blood, and pus.
Cystic Fibrosis
Cystic fibrosis (CF) is an inherited disease of the mucus and sweat glands. It affects mostly the lungs, pancreas, liver, intestines, sinuses, and sex organs.
Diabetes
Diabetes mellitus is a group of metabolic diseases characterized by high blood sugar (glucose) levels that result from defects in insulin secretion, or action, or both.
Down's Syndrome
Down syndrome, Down's syndrome, or trisomy 21chromosomal disorder caused by the presence of all or part of an extra 21st chromosome. Often Down's syndrome is associated with some impairment of cognitive ability and physical growth as well as facial appearance.
Epidermolysis Bullosa
Epidermolysis Bullosa (EB) is a rare disorder caused by a mutation in the keratin gene. The disorder is characterized by the presence of extremely fragile skin and recurrent blister formation, resulting from minor mechanical friction or trauma.
Epilepsy
Epilepsy is a brain disorder in which clusters of nerve cells, or neurons, in the brain sometimes signal abnormally. In epilepsy, the normal pattern of neuronal activity becomes disturbed, causing strange sensations, emotions, and behavior, or sometimes convulsions, muscle spasms, and loss of consciousness.
Familial Dysautonomia
A genetic disorder of the autonomic nervous system. The features of familial dysautonomia include lack of tears, emotional lability, relative indifference to pain, increased sweating, cold hands and feet, red blotching of the skin, corneal anesthesia and corneal ulcers, paroxysmal hypertension, taste deficiency and lack of the fungiform papillae.
Heart/Cardiovascular Diseases
Pediatric heart disease includes many congenital conditions (present at birth). Some involve holes or defects in the heart muscle or holes that should close (patent foramen ovale or patent truncus arteriosis). Others involve problems with the heart valves (pulmonary atresia, tricuspid atresia or Ebstein's anomaly). Many procedures are used to correct pediatric heart problems.
Hemodialysis
Hemodialysis (also haemodialysis) is a method for removing waste products such as potassium and urea, as well as free water from the blood when the kidneys are in renal failure. Hemodialysis is one of three renal replacement therapies (the other two being renal transplant; peritoneal dialysis).
Hemophilia
A group of inherited bleeding disorders in which the ability of blood to clot is impaired.
HIV/AIDS
Acquired immune deficiency syndrome or acquired immunodeficiency syndrome (AIDS) is a disease of the human immune system caused by the human immunodeficiency virus (HIV).This condition progressively reduces the effectiveness of the immune system and leaves individuals susceptible to opportunistic infections and tumors.
Juvenile Rheumatoid Arthritis
Juvenile rheumatoid arthritis (JRA) is a general term for the most common types of arthritis in children. It is a long-term (chronic) disease resulting in joint pain and inflammation, which may lead to joint damage.
Kidney Disorders
Kidney disease is any disease or disorder that affects the function of the kidney.
Leukemia
Leukemia is a cancer of the blood or bone marrow and is characterized by an abnormal proliferation (production by multiplication) of blood cells, usually white blood cells (leukocytes). Leukemia is a broad term covering a spectrum of diseases.
Liver Transplant
Surgery to remove a diseased liver and replace it with a healthy liver (or part of one) from a donor. The most common reasons for liver transplantation in children is biliary atresia.
Mutiple Scelerosis
Multiple sclerosis (abbreviated MS) is an autoimmune condition in which the immune system attacks the central nervous system, leading to demylination.
Metabolic disorders
Inborn errors of metabolism comprise a large class of genetic diseases involving disorders of metabolism. The majority are due to defects of single genes that code for enzymes that facilitate conversion of various substances (substrates) into others (products). In most of the disorders, problems arise due to accumulation of substances which are toxic or interfere with normal function, or to the effects of reduced ability to synthesize essential compounds. Inborn errors of metabolism are now often referred to as congenital metabolic diseases or inherited metabolic diseases, and these terms are considered synonymous.
Musular Dystrophy
One of a group of genetic diseases characterized by progressive weakness and degeneration of the skeletal or voluntary muscles which control movement. The muscles of the heart and some other involuntary muscles are also affected in some forms of muscular dystrophy, and a few forms involve other organs as well.
Osteogenesis Imprefecta
Osteogenesis imperfecta (OI) is a genetic disorder in which bones break easily. Sometimes the bones break for no known reason.
Palliative
Medical or comfort care that reduces the severity of a disease or slows its progress rather than providing a cure. For incurable diseases, in cases where the cure is not recommended due to other health concerns, and when the patient does not wish to pursue a cure, palliative care becomes the focus of treatment.
Prader-Willi Syndrome
Prader-Willi syndrome (abbreviated PWS) is a very rare genetic disorder, in which seven genes (or some subset thereof) on chromosome 15 are missing or unexpressed (chromosome 15q partial deletion) on the paternal chromosome. It is characterized by hypotonia, short stature, polyphagia, obesity, small hands and feet, hypogonadism, and mild mental retardation.
Primary Immunodeficiency
Immunodeficiency disorders increase susceptibility to infection. They may be secondary or primary; secondary is more common. Primary: These disorders are genetically determined; they may occur alone or as part of a syndrome.
Rheumatologic diseases
Lupus is an autoimmune disease characterized by acute and chronic inflammation of various tissues of the body.
Sickle Cell Anemia
Sickle cell anemia (sickle cell disease) is a disorder of the blood caused by an inherited abnormal hemoglobin (an oxygen-carrying protein within the red blood cells). The abnormal hemoglobin causes distorted (sickled) red blood cells. The sickled red blood cells are fragile and prone to rupture. When the number of red blood cells decreases from rupture (hemolysis), anemia is the result. This condition is referred to as sickle cell anemia. The irregular sickled cells can also block blood vessels causing tissue and organ damage and pain.
Skeletal Dysplasia (Little People)
One of a large contingent of genetic diseases in which the bony skeleton is abnormally formed during development. For example, achondroplasia (achondroplastic dwarfism).
Spina bifida
A birth defect (a congenital malformation) in which there is a bony defect in the vertebral column so that part of the spinal cord, which is normally protected within the vertebral column, is exposed. People with spina bifida can suffer from bladder and bowel incontinence, cognitive (learning) problems and limited mobility.
Systemic Lupus Erythematosis
Lupus is an autoimmune disease characterized by acute and chronic inflammation of various tissues of the body. Autoimmune diseases are illnesses that occur when the body's tissues are attacked by its own immune system.
Transplant Recipients
Organ transplant is the moving of an organ from one body to another (or from a donor site on the patient's own body), for the purpose of replacing the recipient's damaged or failing organ with a working one from the donor site.
Thalaessemia
Not just one disease but rather a complex series of genetic (inherited) disorders all of which involve underproduction of hemoglobin, the indispensable molecule in red blood cells that carries oxygen. The globin part of hemoglobin is made up of 4 polypeptide chains (usually 2 chains of one type and 2 chains of another type of chain). In thalassemia, there is a mutation (change) in one of the types of globin chains. Depending upon which globin chain is affected, the mutation typically leads to underproduction (or absence) of that globin chain, a deficiency of hemoglobin, and anemia.
Transverse myelitis
A disease of the spinal cord in which there is demyelination (erosion of the myelin sheath that normally protects nerve fibers). The onset of the disorder is typically sudden. Symptoms include back pain followed by ascending weakness in the legs. There is no cure. Many patients are left with permanent disabilities or paralysis. Transverse myelitis occurs alone and in combination with demyelination of other parts of the nervous system. It may be associated with multiple sclerosis.
Ventilator-assisted
A medical ventilator may be defined as any machine designed to mechanically move breatheable air into and out of the lungs, to provide the mechanism of breathing for a patient who is physically unable to breathe, or breathing insufficiently. Children who are Ventilator- assisted require the use of a ventilator to help them breathe.
Von Willebrand's
Von Willebrand disease (vWD) is the most common hereditary coagulation abnormality described in humans, although it can also be acquired as a result of other medical conditions. It arises from a qualitative or quantitative deficiency of von Willebrand factor (vWF), a multimeric protein that is required for platelet adhesion.