Friday, 11 February 2011

Information about the types of illnesses some children accessing Alfe's Cause have.

Ehlers Danlos Syndrome (EDS). 
EDS is caused by a defect in a protein called collagen, of which there are more than 30 different types. It is a protein and is the main building block of the body providing strength and support. Some examples are ligaments, tendons and cartilage. Consequently, if the collagen itself is defective, it can produce many problems throughout the body. Diagnosis is based on the presenting symptoms and family history of a patient. Many EDS sufferers, however, do not fit conveniently into the definition of a specific type, and are frequently misdiagnosed. The prognosis depends largely on the type of EDS the patient has. For instance, life expectancy in the Vascular Type (formerly type lV) is generally shortened to around 40 years due to the rupture of large blood vessels and the major organs. Pregnancy can be life-threatening in the Classical (formerly types I and II) and Vascular. Internal organs are affected as collagen is present throughout the body, the gastric system is commonly affected in all types and complete gastric failure. The heart is also commonly affected, as well as the autonomic nervous system. Many conditions seem to come hand in hand with EDS, such as Fibromyalgia, Chronic Fatigue, Dyspraxia, Dyslexia and other learning disabilities and chronic pain.

Neuroblastoma is a solid tumour cancer that arises in immature nerve cells and strikes primarily infants and children under 10 years. It is the most common cancer affecting infants with an incidence rate of almost double that of leukaemia. Its cause is unknown. Nearly 70 percent of children diagnosed with Neuroblastoma have advanced-stage disease. The most common place for neuroblastoma to originate is on the adrenal glands located above each kidney. Neuroblastoma tumours can also develop in nerve tissues in the neck, chest, abdomen, or pelvis -anywhere along the chain of the sympathetic nervous system. Jacks tumour developed on his adrenal gland and grew to the size of a football, pushing all his organs to the opposite side of his body, disease had spread to every bone in his body on diagnosis at age 3. The symptoms of Neuroblastoma are widely misdiagnosed as simple childhood complaints such as colic, constipation and growing pains. If diagnosis comes before one year of age, prognosis is far better with an 80% chance of survival. After this age that percentage drops significantly and my son was given 10%. Neuroblastoma has very high relapse rates and there is no relapse protocol available in the UK. Jack lost his fight the day after his 5th birthday.

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