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.