Hereditary Angiodaema Awarness

Hereditary angioedema, also called HAE, is called a very rare and potentially life-threatening genetic disorder that occurs in around one in 50,000 people.

It’s called rare as it’s hard to diagnose and 1% of doctors even know about it .
Only Immunologists and few ENT surgeons are aware if it mostly only The ENT Surgeons that have performed life saving Tracheotomy’s in emergency’s .

We need to raise awareness for this disease anyone can have it and not know it . Especially children. It’s not curable but can be managed if detected and not misdiagnosed .

As you may know I am a sufferer of this disease which took 40 years to diagnose and so many misdiagnosis which resulted with emergency removal of my tonsils at 6 months old ,Gallbladder and appendix by the aged of 12 .
I spent lots of time in hospital emergency on a weekly basis from the age of 6 months .
Doctors believed I had a bad immune system and kept picking up constant colds and flus .
Im probably quite lucky to be here today . I was always sent home with Antibiotics and Anti inflammatory medication which causes a flare up and would send me back to hospital.

People with HAE have unpredictable, recurrent and rapid swellings (HAE attacks) throughout life, that interfere with daily life and can be potentially life threatening.
“Hereditary’ means that this condition runs in families because it is a genetic disorder. However, less commonly, there may be no family history of the condition, as HAE may occur “spontaneously”. Around 20% of cases result from people who have a spontaneous mutation of the particular gene at conception. Subsequently, these people can pass the defective gene to their children.
Severe angioedema episodes can be fatal. Management includes:
Hospital admission for all severe angioedema episodes.
Surgery or any traumatic procedure of the oropharyngeal area such as dental work should be carefully planned.
Although rare, hereditary angioedema (HAE) is associated with episodic attacks of edema formation that can have catastrophic consequences. Laryngeal edema can result in asphyxiation; abdominal angioedema attacks can lead to unnecessary surgery and delay in diagnosis, as well as to narcotic dependence due to severe pain; and cutaneous attacks can be disfiguring and disabling.

Signs and symptoms of HAE

Physical signs of HAE include overt, noninflammatory swelling of the skin and mucous membranes.
Subcutaneous tissues: Face, hands, arms, legs, and buttocks
Abdominal organs: Stomach, intestines, bladder, and urethra; may manifest as vomiting, diarrhea, or paroxysmal colicky pain and can mimic a surgical emergency.
Upper airway (larynx) and tongue: May result in laryngeal edema and upper airway obstruction.

HAE Study The analyzed HAE studies included 3292 patients and 411 deaths due to asphyxia secondary to laryngeal edema. There were 103 deaths of close relatives that were documented to be secondary to the same cause. On average, 1 death from laryngeal edema occurred in every 20 patients .
Through awareness and research GPS can diagnose this through a examination and blood test , but very few GPs have even heard of it !

Too many people die of this disease and if they knew they had Angiodeama lives could be saved including children .
It’s not curable but can be managed with awareness . This fundraiser will launch social media and Gp awareness as well as research into Implementing this disease in University lectures to upcoming Doctors .
Together we can make a difference