More needs to be done for people suffering from HAE

To the Editor:

Have you ever heard of Hereditary Angioedema also known as HAE? 

Hereditary Angioedema, or HAE, is a rare, devastating and often life-threatening disease that has impacted my family directly.  The rareness of this disease makes the search for a cure prolonged and difficult because not many people know about it.

It is also not funded well because there are diseases like cancer or diabetes that impact more people needing the government’s attention and money.

Let me tell you a little more about this disease and how it works. When a person with HAE starts to swell, he or she can experience cramping, vomiting, dehydration, diarrhea, extreme pain, and shock. HAE becomes deadly when the throat swells and blocks the airway.

Swelling occurs rapidly, so it is very difficult to catch before it becomes deadly. It is unknown exactly what triggers the swelling because of the lack of research. However, it is known that HAE impacts approximately one person out of every 100,000 and for these people life can disappear within minutes.

HAE shouldn’t be ignored as much as it is. Although I understand why the government needs to focus on finding cures for diseases that impact more people, something more needs to be done for people with HAE.

My stepfather has HAE and had an attack about a year ago that landed him in a coma for five days. Although it is extremely rare among most people, my 2-year-old sister has a 50-percent chance of having this disease as well, so to me it feels pretty common.

May 16, 2013, was the second annual National HAE Day. This day is recognized by the government to help raise awareness of this rare disease. Although this is great progress from two years ago, the HAE community still feels that it has a far way to go.

With this new awareness, there is now a treatment for HAE. This treatment is taken through infusing medicine into the vein, but it is very expensive, difficult to take, and it is also not a cure. HAE medication costs over $45,000 a month and it needs to be infused twice a week.  Most health insurance plans don’t pay for this.

So what can you do? The major thing that you can do is spread the word, or donate at haea.org. Not many others know about HAE, including doctors and hospital workers.

You can help raise awareness just by getting everyone you know to tell at least two people each.  Then those two will tell two more each, and the word can get out about HAE very quickly.  Hopefully, if my sister does have HAE, by the time she is my step-dad’s age, there will be a cure.

Michael Ardito

Guilderland

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