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Old 03-13-2013, 10:34 PM
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Bryanna Bryanna is offline
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Join Date: Feb 2007
Posts: 4,624
15 yr Member
Bryanna Bryanna is offline
Grand Magnate
Bryanna's Avatar
 
Join Date: Feb 2007
Posts: 4,624
15 yr Member
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Mrs. D.

Thanks for the extra internet links! I personally believe Angioedema is much more common than the stats that you have found because frequently patients are misdiagnosed or never diagnosed properly which leads to higher than recorded stats.

I too unfortunately know a bit about this subject as I was recently diagnosed with Idiopathic Angioedema. I have had some serious swellings of my face, finger joints, and the bottom of my feet but no breathing difficulties what so ever. Although I now carry an epi pen, I hopefully will never have to use it! I have found tons of information on the various types of this condition and if nothing else, it can manifest itself in many forms. Some symptoms being more subtle or obvious than others. The support groups that I have spoken to also agree that this is a much more common condition than realized.

As you know it can be difficult to distinguish the specific type of Angioedema because blood work, allergy testing, etc ..... only represents a picture of what is happening at the time the test was done. HAE testing is not 100% accurate either. What I am finding is that so many people are being treated based on their general symptoms rather than their blood markers.

There is so much to learn about this condition and I am open to anything you learn along your journey. I hope you are able to get a clear diagnosis and can get a handle on your situation. I know just how complicated this journey can be....it's probably the hardest thing that I've ever had to deal with.

I wonder how many people who visit here have Angioedema? Perhaps we should start a thread on it? Unless there already is one...??

Bryanna







Quote:
Originally Posted by mrsD View Post
I would like to clarify the statistic on that link given.
Angioedema is much more uncommon than 1 in 10. The stats I found were 1:50,000. (for hereditary angioedema). This may change with more awareness and better diagnosis of people who inherit this.

here is the quote from the link:


Hereditary angioedema does not have hives as a rule, or bruising dark discoloration, and typically has more common GI attacks. More like once a month or more.

But alot of people do get hives as children. That is also called angioedema. However, hives may respond to antihistamines, which hereditary angioedema does not.

There may be a pink to redness discoloration with the swelling, that is oddly shaped, but does not last long.

This is a better link:
http://www.hcplive.com/publications/...-04/2005-04_02

This is another thorough link:
http://www.haea.org/
This link goes into more detail about the various types including the estrogen triggered type.

The reactions women have around the menses, is because of a FALL in estrogen levels. Estrogen is highest mid cycle.
The falling estrogen at the start of the menses, also will trigger women with certain sensitivities, to pain... migraines(and other severe headaches) will occur at this time. And in seizure prone women seizures will happen when the estrogen falls at this point. Those are called catamenial seizures.
http://en.wikipedia.org/wiki/Catamenial_epilepsy
There is an interesting graph on this link.

The connection to angioedema and estrogen is when excess or high levels are present, there can be more "attacks" of swelling.
This happens with birth control pills, and hormone replacement therapy. In fact estrogen triggered angioedema is treated with androgens in women patients. So at the time of the beginning of the menses, the estrogen is falling and low and less likely to trigger HAE.

It is pretty complicated...and as the first link I gave here, suggests to the doctors reading it, the patient should be referred to an immunologist for evaluation. The blood tests are complicated and there are slight differences in complement levels and C1 inhibitor levels for the various types of angioedema.

The reason I know this, is because I had a crisis of acquired angioedema recently (from a high blood pressure medication), and a lifelong history of GI attacks and attacks following invasive procedures and tests. After I recover from this serious episode, I will be going to the immunologist for further evaluation. But my internist is pretty sure I have HAE. Mine is mostly GI attacks, with only some swelling, and some breathing compromise. Some people have serious breathing episodes which can be deadly. I don't see any mention here of the original poster's daughter having breathing issues.

When a patient has unusual symptoms, it is really imperative
to think outside the box, once obvious disorders are eliminated.
These tend to be genetic in origin for the most part.
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