What's New in Allergy and Asthma?

Living with Chronic Disease: Hereditary Angioedema (HAE)

Living with Chronic Disease: Hereditary Angioedema (HAE)

Yesterday I went to a presentation of a patient with hereditary angioedema (HAE). She is a patient advocate and often shares her story with other people suffering from the same condition.

Many of you probably have never heard of HAE since it is so rare. It usually starts to become evident in the later teenage years with swelling of the extremities and face. Some people also get severe abdominal swelling and pain and a few develop swelling of their throat. It can be a disabling or life-threatening condition.

Unfortunately, many of the patients do not get diagnosed immediately. The have multiple episodes of swelling, ER visits and even surgeries before anybody ever considers they may have HAE. That causes a lot of suffering both emotionally and physically.

As my patient with HAE said in her presentation: ” I hated being known at work and everywhere as the one who is always sick.” I heard from another patient that she was lucky she was able to finish her education because she did not get sick during school days more than the maximum allowed days. Many patients are told it’s just stress or psychological and all they need to do is “relax”. (My patient tried yoga and meditation with minor improvement). Some of the patients will tell you that they get treated as “drug-seekers” (people addicted to pain meds). Others state that on each ER visit they have to undergo a multitude of tests before they receive treatment since the ER staff either does not believe.

After hearing my patient L. speak, I realized how hard it must be to live with a condition like that and to be misunderstood and pushed away by physicians, colleagues and friends for the longest time. How it must be when everybody just tells you that you are just “imagining” the pain due to lack of knowledge about the condition.

It reminds me as a physician about the emphasis of “hearing a patient out.” We tend to make up our mind about a patient/condition before we took the time to look at it from all angles, because common things are common.

Luckily for my patient, there is now focused and effective treatment available for HAE. She is on it and she is able to keep her job without missing too much time. I admire her for her persistence, her courage, and her strength.

If you have HAE or questions about it, contact me or look for www.HAEA.org. There are many good resources.

Comments (1)

  1. This is so refreshing. I am not sure if you are a doctor or someone that simply understands. It doesn’t matter, I do not care. The problem is that, people need to know that we did not pick HAE out of a hat. But I have been accused of finding it in a medical book and pretending to have it. I am still considered a pain med seeker although I was diagnosed at the age of 5. The guilt that comes along with stressing your family only comes second to the guilt that I gave this monster to my children and I live with it everyday. I am at the stage of my life where I refuse now to go to a hospital. I’d now rather sit at home and allow my throat to swell in the comfort of my own home. There is a sense of poetic honor in doing so. Instead of going to the hospital only to be treated subhuman. Anyway, I know that when an individual gets to this point the medical field has truly failed me. Facebook has brought many of us together and it is hard to see us die one by one from the same thing. Doctors telling us not to come until after our throat is very visibly swollen. Usually, by that time it is too late. And our community is one soldier smaller. What world am I leaving for my daughter’s? I promised to always protect them from the boogie man. But it really hurts when there are several boogie men and its the boogie men that you seek out for help. Oh well. What can we do? We are all just, pain med seekers right?

Leave a Reply

Your email address will not be published. Required fields are marked *