Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Angioedema

What is Angioedema?

Angioedema is a rare disorder characterized by rapid swelling of the dermis, subcutaneous tissue, mucosa and submucosal tissues.

 

Angioedema is a rare disorder characterized by rapid swelling of the dermis, subcutaneous tissue, mucosa and submucosal tissues.
Acknowledgement of Angioedema has not been added yet.
1.0http://www.orpha.net
Synonyms for Angioedema has not been added yet.
Cause of Angioedema has not been added yet.
Symptoms for Angioedema has not been added yet.
Diagnosis of Angioedema has not been added yet.
Diagnostic tests of Angioedema has not been added yet
Treatments of Angioedema has not been added yet.
Prognosis of Angioedema has not been added yet.
Tips or Suggestions of Angioedema has not been added yet.
References of Angioedema has not been added yet.
HAE Documentary Created by Eric
Last updated 18 Jul 2013, 04:02 PM

Posted by LaurenC
18 Jul 2013, 04:02 PM

How did you all go about getting a diagnosis? My doctors just don't seem interested

Posted by msdarlin67
19 Jul 2012, 07:53 AM

http://www.swellmovie.com/

Posted by scruton2
29 Mar 2012, 08:22 PM

I'm HAE III, subtyped as post menopause exacerbated. UGH. It got so much worse after menopause. I now have weekly abdominal attacks, have gone through millions of dollars worth of special medications, ER visits, diagnostics, etc. Am currently using icatibant/Firazyr when the attacks start. It's helping a lot. No more pain meds. Fingers crossed that it keeps working. Also have Kalbitor/Ecallentide as a rescuer med too, but it cannot be self-administered, and so far the Firazyr, a Bradykinin inhibitor seems to be working better. No side effects of being really tired after dosing. Thank God I have a pretty good insurance plan.

View Full Thread (3 more posts)
Community External News Link
Title Date Link
A dangerous delay: Why it can take years to diagnose life-threatening rare diseases 04/23/2022
Community Resources
Title Description Date Link
HAEA

The US Hereditary Angioedema Association provides HAE patients and their families with a support network and a wide range of services including physician referrals, and individualized patient support.

03/20/2017

Clinical Trials


Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

Community Leaders

 

Expert Questions

Ask a question

Community User List

 

My daughter has been diagnosed with Hereditary Angioedema Type 3.  

I have a 16 year old with possible hereditary angioedema III
Proud stepfather of wonderful 14 year old daughter who has been cursed with Type 3 Hereditary Angioedema.
All my life, even as a baby, I've suffered from my face swelling, particularly my eyes, lips and chin. Despite many trips to the GP and hospital my parents were originally told I was just attention...
My 30 year old daughter has Hereditary Angioedema and Multiple Sclerosis. We have not found anyone with these two deseases simultaniously and have problems because the treatment for HA is not...
Diagnosed with acquired angioedema recently. Having a difficult time finding info. and support. I feel like I am the only one around with it.
I was told that I have chronic capillary leak but that I do not fit into the strict category of SCLS because I do not have an episode resulting in an ICU stay or proven hemoconcentration. I am...

I was diagnosed in 1998 with SCLS. I had been ill for 6 months, and gained 80 lbs. I was given prednisone too prevent an allergic reaction to a test. It worked wonders, and I lost the fluid. I...


Start a Community


Don't See Your Condition On Rareshare?

Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.

FAQ


Have questions about rareshare?

Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.

Discussion Forum

HAE Documentary

Created by Eric | Last updated 18 Jul 2013, 04:02 PM


Communities

Our Communities

Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.

FIND YOUR COMMUNITY
Physicians

Our Resources

Our rare disease resources include e-books and podcasts

VIEW OUR EBOOKS

LISTEN TO OUR PODCASTS

VIEW OUR GUIDES

Leaders

Our Community Leaders

Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.