Raising awareness is extremely important when it comes to rare diseases. After all, rarity typically results in minimal public and medical awareness. That’s why patient communities and other dedicated individuals come together to advocate for rare disease patients. One example is hae day :), which is organized and run by HAE international (HAEi). Join Patient Worthy to learn more about this important day and how you can participate!
Before we can raise awareness and advocate, we should first understand what HAE is. A genetic defect on Chromosome 11 causes hereditary angioedema (HAE), a rare disorder characterized by episodes of swelling under the skin. This defect is passed down in an autosomal dominant pattern. Affected individuals have a protein that does not function properly, C1-inhibitor. When this protein does not do its job, excessive amounts of bradykinin are produced. It is this peptide that causes the characteristic swelling of HAE.
This swelling occurs in the form of episodes, and it can affect any part of the body. However, it most commonly impacts the throat, face, intestinal tract, and extremities. Intestinal symptoms may also include nausea, vomiting, and pain, alongside swelling. If the throat swells it’s important to seek help, as it could stop the affected individual from breathing.
hae day 🙂
Organized by HAEi, this day is meant to raise awareness for hereditary angioedema around the globe. Getting involved is easy, as all you have to do is get active and walk! Through steps, HAEi will raise awareness within the general public, medical professionals, representatives of the industry, and those responsible for making decisions in the healthcare sphere.
Essentially all you have to do is get active in some way – whatever your preferred method is, make it fun for yourself – and report in on HAEi’s website. The organization will take it from there and translate your healthy activity into steps. Last year alone, 168,787,911 steps were taken. This equates to more than three trips around the world!
Now it’s time to see if we can beat this record in 2022. So far, over 30 million steps have been logged by over 2,300 participants. And there’s plenty of time to join in and add to these numbers yourself! It doesn’t have to stop there, either. You can join a team to gather steps, share photos, and earn various badges if you want to get more involved.
Want to learn more? Visit HAEi’s website to read all about hae day :).