The E.WE (/ē/·/wē/) Foundation is an IRS approved 501(c)(3) healthcare advocacy organization established to provide resources and support to families affected by Edwards Syndrome or Trisomy 18 and other rare diseases.
Courtesy of WLRH | Huntsville Public Radio
Elijah Wayne Edwards, Full Trisomy 18, 3/28/17 –
WHAT IS EDWARDS SYNDROME, TRISOMY 18?
Edwards Syndrome or Trisomy 18 is 1 of more than 10,000 rare diseases occurring at a rate of 1 in every 3,315 births, according to the Centers for Disease Control and Prevention, and in about 1 in 5,000 live births, according to the National Institutes of Health, each year in the United States. Trisomy 18 is a genetic chromosome abnormality caused by an error in cell division. When this happens, instead of the usual chromosome pair, an extra chromosome 18 results. Due to several life-threatening medical problems, many individuals with Trisomy 18 die before birth or within their first month.
WHAT IS A RARE DISEASE?
In the United States, a rare disease is defined as a condition affecting fewer than 200,000 people. There are as many as 10,000 rare diseases. The total number of Americans living with a rare disease is estimated at between 25-30 million.
Rare diseases –
- May involve chronic illness, disability, and often premature death
- Often have no treatment or not very effective treatment
- Are frequently not diagnosed correctly
- Are often very complex
- Are often caused by changes in genes
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