posted May 11, 2011 06:15 PM            

Note:
My abdominal edema can be 4x plus of what these pictures show.
These are not me. I look way horribly worse, like pregnancy looking x4+.

Often increases of 17 to 22 inches to my abdomen in literally seconds to a minute happen.

It is excruciatingly painful to say the least.

Today as with many days, I feel and look like a puffed up troll. It affects my face too. Can leave bruises when swelling abates.
Must own different sizes of clothes or super baggy to accommodate the swelling.
It happens up to several times a month.
It can be fatal and believe me;
one feels like they are dying during the bad episodes.
It fraking runs and ruins one's trying to live one's life.
The treatments cause weight gain.
I have lost 145 pounds or so and have 70 more to go to where I feel I look good and more to lose to be svelte.
So I hate the weight gain meds and will not take unless I am at death's door.
All this fraking shite on top of being disabled due to neurological and muscular/bone etcetera damage.

Sorry, but still coming out of attack and feel awful.
And look like a monster.

quote:

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What is HAE? Hereditary Angioedema www.haea.org/what-is-hae/

Hereditary Angioedema (HAE) is a very rare and potentially life-threatening genetic condition that occurs in about 1 in 10,000 to 1 in 50,000 people. HAE symptoms include episodes of edema (swelling) in various body parts including the hands, feet, face and airway.

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posted May 11, 2011 06:18 PM            

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In addition, patients often have bouts of excruciating abdominal pain, nausea and vomiting that is caused by swelling in the intestinal wall. Airway swelling is particularly dangerous and can lead to death by asphyxiation.

Important: Patients with the slightest hint of throat swelling should seek immediate treatment to ensure that their airway is not compromised.
HAE patients have a defect in the gene that controls a blood protein called C1 Inhibitor. The genetic defect results in production of either inadequate or non-functioning C1-Inhibitor protein. Normal C1-Inhibitor helps to regulate the complex biochemical interactions of blood-based systems involved in disease fighting, inflammatory response and coagulation. Because defective C1-Inhibitor does not adequately perform its regulatory function, a biochemical imbalance can occur and produce unwanted peptides that induce the capillaries to release fluids into surrounding tissue, thereby causing edema.
HAE is called hereditary because the genetic defect is passed on in families. A child has a 50 percent chance of inheriting this disease if one of his or her parents has it. The absence of family history does not rule out the HAE diagnosis, however. Scientists report that as many as 20 percent of HAE cases result from patients who had a spontaneous mutation of the C1-Inhibitor gene at conception. These patients can pass the defective gene to their offspring.

Because the disease is very rare, it is not uncommon for patients to remain undiagnosed for many years. Many patients report that their frequent and severe abdominal pain was inappropriately diagnosed as psychosomatic, resulting in referral for psychiatric evaluation. Unnecessary exploratory surgery has been performed on patients experiencing gastrointestinal edema, because abdominal HAE attacks mimic a surgical abdomen. Before therapy became available, the mortality rate for airway obstruction was reportedly as high as 30 percent.

FDA-approved medication for treating the symptoms of HAE became available in the US for the first time in late 2008.

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posted May 11, 2011 06:19 PM            

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Hereditary Angioedema (HAE) Symptoms

Hereditary Angioedema (HAE) patients experience recurrent episodes of swelling in the hands, feet, face, gastrointestinal tract, genitals, and larynx (throat) that can last from two to five days. The frequency of and severity of attacks varies dramatically among patients, and even among those within the same family. A survey of HAE patients in Italy (over 500 identified and followed) revealed that slightly less than one half of untreated patients have more than one attack per month, and forty percent have 6 to 11 swellings per year.

HAE-related swelling is non-whealing and non-pruritic with ill-defined margins, and generally remains unrelieved by antihistamines and corticosteroids. About 25 percent of Hereditary Angioedema (HAE) patients experience a non-pruritic erythematous rash that often occurs during the attack prodrome.

Swelling involving the feet and hands is uncomfortable and can be extremely painful, and often prevents patients from being able to participate in normal daily routines.

Gastrointestinal attacks are characterized by excruciating abdominal pain, nausea, vomiting, and diarrhea caused by swelling in the intestinal wall. These symptoms are distinguishing features of Hereditary Angioedema (HAE) because abdominal pain is rarely seen in other types of angioedema. Hypovolemia (an abnormal decrease in blood volume) can occur from a combination of fluid loss, plasma extravasation, and vasodilation, and can progress into hypovolemic shock.

Approximately one third of patients with undiagnosed Hereditary Angioedema (HAE) undergo unnecessary surgery during abdominal attacks because the symptoms mimic a surgical emergency.

Laryngeal edema is the most significant feature of HAE, because laryngeal swelling can close the airway and cause death by asphyxiation. Studies of Hereditary Angioedema (HAE) families indicate that death from laryngeal edema can be as high as 30 percent of those affected by the disease. Surveys of Hereditary Angioedema (HAE) patients reveal that approximately 50 percent experienced at least one laryngeal episode in their lives. A study by German investigators that focused exclusively on airway attacks in 123 patients revealed that nearly 80% of the laryngeal edemas occurred between the ages of 11 and 45 years, and the mean interval between onset and maximum development of laryngeal edema was 8.3 hours. Nevertheless, laryngeal edema must be treated as a medical emergency, and patients should seek prompt treatment as soon as throat involvement is suspected.
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What causes Hereditary Angiodema (HAE) attacks?

Most attacks occur spontaneously, with no apparent reason; however anxiety, stress, minor trauma, surgery, and illnesses such as colds and flu have been cited as triggers. Trauma to the oral cavity caused by dental procedures make HAE patients particularly vulnerable to airway attacks. Patients have also reported swelling in extremities following typing, prolonged writing, pushing a lawn mower, hammering, shoveling, and other physical activities.

In women, menstruation and pregnancy seem to have a major effect on disease activity. Some women patients report a definite increase in the number of attacks during their menstrual periods. During pregnancy, some patients note an increase in the frequency of attacks, while others have reported a decrease. Use of oral contraceptives and hormone replacement therapy is associated with an increase in the frequency and severity of attacks.

ACE Inhibitors have been known to increase the frequency and intensity of HAE attacks. ACE Inhibitors are often prescribed to treat high blood pressure. Below is a list of some of the ACE Inhibitors licensed in the US:

* captopril (Capoten)
* benazepril (Lotensin)
* enalapril (Vasotec)
* lisinopril (Prinivil, Zestril)
* fosinopril (Monopril)
* ramipril (Altace)
* perindopril (Aceon)
* quinapril (Accupril)
* moexipril (Univasc)
* trandolapril (Mavik)

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posted May 12, 2011 11:39 AM            

lechien
Just having folks care and understand helps so very much! And in my in person life having folks not freak out when I look like
I am suddenly pregnant with a 40+ pound baby,
and all puffy anywhere else, sometimes looking like I have been bitten multiple times by bees.
It is not always easy to look my best.
I want to go hide myself away so people do not see me like that. It ain't pretty.

posted May 14, 2011 03:51 AM            

Sorry you have to endure something like this Lexx.
It's amazing what the body does, I can't believe you can swell so much!

I didn't even know this existed, though I've heard of edema and I thought my swollen ankles in my previous pregnancy were bad! I will never ever complain again!

((( )))

posted May 16, 2011 12:58 AM            

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Originally posted by Ami Anne:
Lexx
That looks so painful

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Oh it is!!!!!!!!!!!!!
I just have to ride it out each time.
Feels like in the Alien movies.
"shudder"

posted May 23, 2011 08:09 PM            

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posted May 23, 2011 11:49 PM            

Thank you both{{{hugs}}}
After effects bruising, tired and sore like I have been in the boxing ring and lost;
but out of danger again.
Sigh
Just got to ride it out each time.