the HAE Awareness Ribbon Fund
Donation protected
the HAE Ribbon © was created by Dakota Mari' to raise awareness for Hereditary Angioedema. She herself is affected by this potentially life threatening - incurrable condition.
The Denim side (jeans) is for the genetic aspect of HAE. The Zebra print is for it being a rare condition (they say when you hear hoof beats look for horses not zebras...HAE is a Zebra). Hidden in the zebra stripes are the letters HAE!
Hereditary angioedema (HAE) is a rare, genetic disorder characterized by frequent, unpredictable, debilitating, and potentially life-threatening swelling attacks that can happen anywhere in the body, including the throat, abdomen, face, hands, feet, and genitals. HAE affects about 6,000 people in the United States of all races, and equally in men and women. Because the symptoms of HAE can mimic other conditions, HAE is commonly misdiagnosed. In fact, approximately 68 percent of people with hereditary angioedema in the United States are initially misdiagnosed, and many people experience delays in diagnosis of up to two decades. Alarmingly, about one-third of undiagnosed patients have had unnecessary exploratory surgery due to abdominal swelling, which causes symptoms that mimic surgical emergencies. Hereditary angioedema can have a major impact on people with the condition. Each year, HAE may account for 15,000 to 30,000 emergency room visits and up to 100 days of lower functioning, which can result in people missing educational or career opportunities and a decreased overall mental and physical health.
Our goal is to finalize creation of the HAE ribbon into print ready form and to have Lapel Pins, keychains, magnets, emergency medical info contact items, stickers and temporary tattoos produced and distributed to patients and families effected by HAE whether they can afford to make a donation for the items or not. Any excess proceeds will be used to assist patients and thier families to connect with others suffering/surviving with HAE themselves as well as donations to HAE related advocacy groups!
Once launched all items will be available for order on an individual basis for those wanting smaller quantities. Every/any amount will help us get this project launched to increase awareness and show support for those affected by this Orphan disease!
The Denim side (jeans) is for the genetic aspect of HAE. The Zebra print is for it being a rare condition (they say when you hear hoof beats look for horses not zebras...HAE is a Zebra). Hidden in the zebra stripes are the letters HAE!
Hereditary angioedema (HAE) is a rare, genetic disorder characterized by frequent, unpredictable, debilitating, and potentially life-threatening swelling attacks that can happen anywhere in the body, including the throat, abdomen, face, hands, feet, and genitals. HAE affects about 6,000 people in the United States of all races, and equally in men and women. Because the symptoms of HAE can mimic other conditions, HAE is commonly misdiagnosed. In fact, approximately 68 percent of people with hereditary angioedema in the United States are initially misdiagnosed, and many people experience delays in diagnosis of up to two decades. Alarmingly, about one-third of undiagnosed patients have had unnecessary exploratory surgery due to abdominal swelling, which causes symptoms that mimic surgical emergencies. Hereditary angioedema can have a major impact on people with the condition. Each year, HAE may account for 15,000 to 30,000 emergency room visits and up to 100 days of lower functioning, which can result in people missing educational or career opportunities and a decreased overall mental and physical health.
Our goal is to finalize creation of the HAE ribbon into print ready form and to have Lapel Pins, keychains, magnets, emergency medical info contact items, stickers and temporary tattoos produced and distributed to patients and families effected by HAE whether they can afford to make a donation for the items or not. Any excess proceeds will be used to assist patients and thier families to connect with others suffering/surviving with HAE themselves as well as donations to HAE related advocacy groups!
Once launched all items will be available for order on an individual basis for those wanting smaller quantities. Every/any amount will help us get this project launched to increase awareness and show support for those affected by this Orphan disease!
Organiser
Dakota Mari'
Organiser
Kernersville, NC
