Hereditary Angioedema… What? You’ve Never Heard of It? Read This!

Hereditary angioedema (HAE) has long been misunderstood.

Many patients go for years without a proper diagnosis because the medical community knows very little about this rare condition. Part of my job here at Patient Worthy is to help raise awareness of rare diseases, and hereditary angioedema is one that really needs attention.

What is HAE?

It’s a genetic condition that causes patients to have episodes of swelling, particularly in the hands, face and feet. A person’s airway can also be compromised. And when that happens, it can be deadly. This is one of the reasons I’m passionate about raising awareness for HAE; emergency room personnel need to know about it to save lives. Patients can also experience debilitating abdominal pain, as well as nausea and vomiting.

Luckily, treatments are improving. Where once there was NO treatment available, today, there are several designed to treat acute attacks. And, this is exciting, there is a new drug being tested in the United Kingdom that, if approved, may help to PREVENT attacks.

Pharma company KalVista has begun Phase I of a clinical trial for the new drug which is currently known as KVD818. If everything goes according to plan, this is a potential game-changer for people who have mostly suffered in silence.

In the meantime, if you or a loved one has HAE and you need help, contact the US HAE Association. They offer support, resources, and information that can make life a little easier.

And, let’s all keep our fingers crossed that KVD818 fulfills its early promise.

Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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