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…
I don’t know what it is about hereditary angioedema (HAE) that makes people with it have a really great sense of humor, but they do. Maybe it’s the absurdity of…
Al igual que muchos con angioedema hereditario, esta familia no sabía que la enfermedad estaba afectando a varios de sus miembros hasta que uno de los miembros, Ken, fue diagnosticado…
Welcome back Patient Worthians! Are you looking forward to 2017? Well you should be if you have HAE! Ever heard of Botox? If you have, you probably think of Hollywood…
There's good news for people living with Hereditary Angioedema (HAE), the genetic disorder that results in sudden and severe swelling basically anywhere throughout the body. As those living with HAE know,…
El angioedema hereditario, o AEH, es una rara enfermedad genética que es potencialmente mortal con un muchas preguntas sin respuesta aún. Sin embargo, los científicos del Instituto Karolinska en Suecia,…
1. What people I don't know think my Hereditary Angioedema (HAE) swelling is: 2. What my previous boss thinks my swelling is: 3. What the ER thinks my swelling is: 4.…
Amanda luchó durante años para comprender el dolor y la hinchazón que se mantuvo experimentar. Sus médicos no podía entender era incorrecto y que nunca supo por qué la garganta…
¿Por qué les importa tanto las enfermedades raras a las compañías farmacéuticas? Congreso. La FDA. Defensores de los pacientes. Y Venture Philanthropy. Cuando se trata de enfermedades raras, los medicamentos…
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