Ever since I was little I have always loved the thought of Mother’s Day. My mom has always been a hero in my mind. I remember thinking to myself, “She…
We have written about the anatomy of an HAE attack before. It’s a living nightmare. HAE is a rare genetic disorder. It is characterized by recurring, unexplained, severe swelling underneath…
Hereditary Angioedema, or HAE, is an extremely rare genetic condition. Patients with HAE experience swelling under the skin in possibly many different parts of the body. Individuals with HAE do…
A new therapy option for hereditary angioedema (HAE) has recently received FDA approval! Marketed as Haegarda by biopharmaceutical company, CSL Behring, this subcutaneous C1 Esterase Inhibitor is now usable in…
Ah, the seventh-grade science fair, I remember it well. Not being an overly imaginative student, I came home and announced I was going to make an exploding volcano for my…
Attention hereditary angioedema patients: preventative treatment is on the horizon! Shire plc is one of the global leaders in rare disease research and pharmacology, and the group recently released positive…
Want some more news, events and announcements on HAE? We got 'em! [one_half] [/one_half] [one_half_last] Get the Most Updated HAE Treatment Information Treatments Are Available: What Now? New,…
One of my biggest struggles used to be living without a diagnosis and trying to figure out what to say to people. What was I supposed to say when I…
One of the hardest parts of living with a rare or chronic condition such as hereditary angioedema (HAE) is being told “but you don’t look sick!”—even when you feel like…
About 1 in 10,000 people are affected by hereditary angioedema (HAE)--and most don't have a clue that the condition even exists. HAE can be fatal, if not treated. Almost every family…
Lynn Holman believes that her pregnancy may be the reason she got diagnosed with hereditary angioedema (HAE). At first, Lynn thought she had a bad allergic reaction one morning because…
Now that the brutal and bruising 2016 Presidential Election is behind us and we’ve waded into the Trump era, maybe we can finally move past some of the most divisive…
Hereditary angioedema (HAE) causes unexpected swelling in the hands, feet, abdomen, and face. HAE can be fatal when the patient has a laryngeal attack, where swelling in the throat makes it impossible…
Close your eyes. Now imagine what it would be like to have a hand swell to two, three, or four times as large as it normally is. It could happen…
Happy Friday Patient Worthians! What happens when big pharma combines forces? Also, what are you doing in March? We have a conference for you! What are the complications of having multiple…
Este es el escenario: una mujer y un hombre entran a la sala de emergencia con los mismos síntomas. Ambos tienen un terrible dolor en la región abdominal. El hombre…
Jake Conaway aprendió lo peligroso puede ser el angioedema hereditario (AEH) cuando tenía sólo siete años de edad. Fue entonces cuando su padre murió a causa de la condición genética…
Happy Friday Patient Worthians! Do you wish you can take a day off from your rare disease? What about when it seems like it's getting to be too much and…
To read part 1 of Teresa's post, click here. The sooner you treat [during an HAE attack], the better HAE meds work! The second stage of attacks is the swelling that is…
First described in 1882 by Heinrich Quincke, angioedema was regarded for more than one century as a rare disease. Subsequently, it was established that the hereditary form of the disease…
Happy New Year Everyone! How are those resolutions coming along? This week, we have a powerful post from one of our contributors who stopped taking her meds in favor of alternative…
Click here to read Part 1 of Theresa's HAE Diagnosis. A couple of months later I flew back to Nebraska, got sick on the plane with an abdominal attack at…
When I was 20 years old, my new husband and I celebrated our marriage with family and friends, with a luncheon where there was no alcohol. Neither of us drank…
Do you ever you read a headline and do a double take? The “what the hell did I just read” head shake combined with the eye squint—just in case you…
Last summer, I was sitting on my deck, reading the NY Daily News (don't judge me; I've been reading it since I was six years old), and I came upon…
© Copyright 2024 Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
