Swllings of face. Throat stomach.hands feet. Stress. Dental problems. Heat. Cold can bring it on...its an autoimmune disease.

World map of Hereditary Angioedema

There are 363 people in the map

Find people with Hereditary Angioedema through the map. Connect with them and share experiences. Join the Hereditary Angioedema community.

HEREDITARY ANGIOEDEMA

Synonyms:
Fatigur. Stress. Irritability. Itching. Hives. Sorenesshae

Types:
Haea 1.

SYSTEMS AFECTED

Circulatory system
Digestive system
Endocrine system
Immune system
Lymphatic system
Nervous system

Symptoms

Swellings.

Treatments

Cinyrze. Fyrizar. Berninent. Reconost. Kalibator

Specialist who treat it

Allergology

Hereditary Angioedema stories


LINDA ACTON'S STORY


Mine started in 2009 with my first swell, it was my lips and cheek. That is the same time the ucartia started also. It took my Dr. 5 years to find something to help me control and survive my Angioedema. I never knew how bad this could be till I was d...

Views: 1069 by Linda Acton

AEH


Desde niño tuve que soportar los diversos episodios de AEH sin saberlo, pasando de medico en medico con diversidad de diagnosticos y ordenes de cirugias innecesarias, gracias a Dios no acudi a ninguna. Fue hace tres años que optuve el d...

Views: 880 by Álvaro García

MY HAE STORY


My earliest memory of HAE symptoms was when I was about 6 or 7.  I would occasionally get the abdomen swelling, be sick and sweating all day, then I would finally vomit and then feel better, go to sleep and be better the next morning.  I co...

Views: 874 Dec 27, 2015, 9:32 PM by Connie Raines

HAE IN ME


I was diagnosed accidentally, after seeing a TV show where the host talked about her HAE in 2014. My first attack was at 8, when I was mistakenly hospitalized with appendicitis.  The surgery wasn't done, because I felt better in 3 days.  N...

Views: 825 by Ai Zhan

HAE HELP


i was dx in 2008 with my first fasel swell . im hae type 2 . im co founder of the facebook group ( https://www.facebook.com/groups/156649074393978/ )

Views: 791 by brian allen

View more

Hereditary Angioedema forum


CINRYZE SHORTAGE


Hi All, Is anyone aware of Cinryze experiencing a shortage supply? If so, why and where is this shortage (US or Europe)?   Thanks!

Views: 912 Aug 9, 2017, 2:19 PM by MS123

CINRYZE SHORTAGE


Hi All, Is anyone aware of Cinryze experiencing a shortage supply? If so, why and where is this shortage (US or Europe)?   Thanks!

Views: 457 Aug 9, 2017, 2:19 PM by MS123

FOR THOSE OF YOU ON CINRYZE, FIRAZYR, OR KALBITOR


Hi All, For those of you currently (or in the past) taking Cinryze, Firazyr, or Kalbitor, has Shire always paid for your co-pays through the co-pay assistance program or was there a limit to how much they paid? I've also heard that the case managers...

Views: 360 Feb 8, 2017, 2:34 PM by MS123

PATIENT PERSPECTIVE


Hi Everyone, I am interested in understanding and learning about your perspective on treatments and services available for HAE. What happens when you lose insurance and you need to obtain treatment? During this time, are you given treatment fre...

Views: 356 Jan 24, 2017, 4:34 PM by MS123

WHAT DO YOU THINK ABOUT...


Hi Everyone, I'm trying to understand what it is like for people with HAE. Therefore, would you ever switch treatment? Why or why not? What happens if you lose insurance coverage? Are you still recieving treatment? Was there a time where you had to ...

Views: 343 Feb 3, 2017, 4:35 PM by MS123

Ask a question and get answers from other users.

View more