Answered Questions

My recent 'Ask Me Anything' post got a bit of engagement.

My post:

"Ask me anything about Hereditary Angioedema".

The questions I have received so far:

• "I have HAE as well what meds are you on and are you on prophylaxis?"

• "How many times approximately do you swell a month?"

• "What places are your usual swell spots?"

• "Are there any foods that can reduce swelling episodes?"

Before I answer these questions, you are welcome to click here for a generalized and brief overview of what Hereditary Angioedema actually is. Of course, it explains only the very basics of this complicated disease.
The summary of it is that this is a Hereditary blood disorder. People with HAE are either missing a critical component in their blood, or that component is somehow not functioning properly or at all. There are three types of HAE, defined only because of bloodwork and the common triggers of attacks - the symptoms of all three types are virtually identical in nature. Although each person's experience is just a little bit different.
This disorder in the blood will result in swelling episodes. They have been defined as similar in a sense to hives, but underneath the skin. So it resembles an allergic reaction and the swelling can occur anywhere in the body, including organs, face, tongue, throat, extremities, abdomen, even the eyes, etc... Anywhere.

So to answer the questions:

1. "I have HAE as well what are you on for meds and are you on prophylaxis?"

I do take prophylactic injections of Berinert 2x a week, and then I receive IV treatments on top of my prophylaxis if I have any severe swelling. Severe swelling would include anything in the throat or face, any severe organ swelling, and any severe acute swelling that cannot be improved by sub-cutaneous injection. This treatment plan has dramatically improved my overall disease management.

2. "How many times approximately do you swell a month?"

Now, on the above treatment plan, I have minor swelling in my arms, legs, abdomen, and breasts, a few times a week. I am now only suffering severe swelling once every couple of months - the type requiring a trip to the ER for IV treatment.

3."What places are your usual swell spots?"

My usual areas of swelling are my arms, legs, abdomen, and breasts for my externally visible swells, and my throat, bladder, intestines, and occasionally (now) my pancreas for internal/organ swelling. My face swells once in a while, but I tend not to notice as much. Since prophylaxis, I do not get the deforming facial swelling (and even only had that a couple of times). Every so often I will notice a change in my face shape - and I think that if my face wasn't so small to begin with I would notice it much more.

Before prophylactic medication, my external swelling episodes could be so severe that my clothing would begin ripping at the seams because of how puffy I got and how much my body would expand.

4. "Are there any foods that can reduce swelling episodes?"

Sorry - as far as I know, the answer to that question is no.
If you are experiencing a swell in a particular organ, there are probably foods to avoid (like avoiding alcohol during a bladder swell, avoiding carbs during a pancreatic swell, and avoiding foods that don't digest well during an intestinal swell).
What I do find is that things like caffeine - anything that can induce a stress response - can be a strong trigger for episodes, so I would suggest avoiding those kinds of foods.
Unfortunately, because there is something missing in the blood, I am not aware of any foods that can mimic that vital component. Even the medications available are blood products to replace that component.

If any more questions roll in about HAE, I will add them to this post.
Thank you so much for your questions!!