HAE The disease!

I am trying to bring awareness to the disease Hereditary Angioedema (HAE) which has no cure and is passed on from generation to generation and has up to 30% mortality due to laryngeal swelling.

Hello my name is Maruchy and I am a trainer trying to raise money in oder to develope medical alert dogs for this terrible disease. I work with a puppy at the moment who is the 1st to detect this disease saving his owner's life every time! with your help we can open up a facility to help families with babies and anyone plagued with this disease to live a longer, happier life with a medical alert dog dedicated to keeping them alive!

This is Lefty and his story:
I received a call on a Friday 3 month ago, on the other end of the line was Laurie saying she was referred to me by one of my students and that she was picking up a puppy that afternoon. She told me her doctors have told her she will most likely be completely blind within a year and wanted to turn this puppy into a seeing eye dog.
Even though my expertise is not in seeing eye dogs I knew the puppy needed the basics and over all manners! I met Laurie and Lefty three days later on Monday morning. Lefty was a bit timid at first but warmed up fairly quickly. Once I was there I learned all about Laurie's disease Hereditary Angioedema (HAE) a very rare and potentially life-threatening genetic condition that occurs in about 1 in 10,000 to 1 in 50,000 people. HAE symptoms include episodes of edema (swelling) in various body parts including the hands, feet, face and airway. That weekend was the first weekend Laurie did not swell in 4 years of having this disease.
In Laurie's case the left side of her face, head and neck swell and with the neck swelling it closes her airways and will die without her medication. Laurie has had a couple of close calls and has had to be hospitalized which turns out to be thousands of dollars. In turn the insurance companies are always giving her grief and even her doctor has to step in and speak with them.
As time went by and Lefty progressed in his training I told Laurie to allow him to sleep with her because her body chemistry is not the same as someone like me for instinct. Lefty began to sleep with her and about a month ago started to detect the swelling before it gets so bad that she needs to be taken to the hospital. As time passes Lefty's detecting more and more saving Laurie's life every time. There have been no other dogs that have been able to detect this disease.
Even though we have started exercises for Lefty to become a seeing eye dog, Lefty has plans of his own, saving Laurie's life is his priority!
Lefty continues to improve every week on his exercises in finding help for Laurie if she were to ever need it. Laurie's site is getting worst but Lefty is right there to pick thing off the floor for her and find help if needed.
Laurie wants to be able to help others with her type of disease and by helping Lefty pin point how he is able to detect these swellings can save her life as well as others.

Lefty is 8 month old now and is getting ready for his CGC canine good citizen star puppy exam. As I continue to work with Lefty I can see what a special puppy he truly is. Together we would like to bring awareness of this disease not just because of Lefty who is the only dog at the moment detecting the attacks but because the medication that works for Laurie comes from the UK and she relies on that medicine to live! If one day the FDA decided they weren’t going to allow the meds into the US Laurie would die. It is so important to try and get as many people in the medical industry and even service dogs to be able to save the lives of these people with HAE!
Attached please fine some more information on HAE and a few videos of people and kids going through their swelling. As for the medication, once administered it won’t take affect for at least 20 minutes which if a HAE person swells in the throat blocking their airway they will die. Lefty has been detecting Laurie’s swells before it gets to that point waking her up at night and not climbing off of her till she is breathing easily.
There are doctors in the UK who have been working with HAE patients for over 50 years.  
We will be featured on one of the major Latin TV stations here in Miami Telemundo (partners with Comcast) and they will be picking up Lefty and Laurie’s story, we will be taping this month and it will air in May in hopes that the word gets out nation wide. May 16th is national HAE Day and I am hoping it will air a couple of days before this date.
Some key facts about this disease:
some important points:
9 year average for someone to diagnosis of this disease
6500-14,000 I believe now currently believed to be known
Many more may be mis-diagnosised because of similar symptoms
50% of disease being carried on thru families. Remember Stress, Fatigue, Exertion…think about a kid trying to play sports – for a kid with HAE its life threatening.
At the HAE conference they stated there was a 40% mortality rate even today with the meds
Prior to 2008 when new meds hit the market most patients relied on Danazol. It destroys your liver but that was the choice take or die by HAE.
HAE patients do get short notice of fatigue and tingling. So some say why do people die at that rate. Well the notice is very short about 5 minutes. The disease can start in your hand swelling and quickly move without warning and go to your throat in seconds. Most die in their sleep because they don’t wake up. These meds take 20 minutes to work so if you don’t get the alert in time even if you take it you could still die within that 20 minute window.
Why is lefty important:
The number one trigger for HAE is STRESS. Outside of detection or not, dogs help during that period by helping the person relax, think about the 20 minute window for meds to work. If someone told you you only have 20 minutes to live and here is a tool that will make sure you get that 20 minutes wouldn’t you take it?

Maruchy Perez
Doggie Days “ Training For Life”
CGC Evaluator / Dog Trainer


Maruchy Perez
Miami, FL

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