Amanda struggled for years to understand the pain and swelling that she kept experiencing.
Her doctors couldn’t figure out was wrong and she never knew why her throat would sometimes tighten and her abdomen would leave her wracked with pain. Finally one doctor, against another’s opinion, decided to run a blood test to check her C1 inhibitor antigen levels.
When she finally received confirmation that she had HAE she experienced a mix of emotions. It was difficult to hear but it also came with a sense of relief and validation.
She finally had an explanation for the symptoms that she had been experiencing for two years. With the HAE diagnosis came proof that what she had been feeling was legitimate despite doctors’ skepticism and confusion. She had dealt with so much frustration because of physicians’ claims that her symptoms were “all in her head” and that there was no solution.
She had adjust to life with an HAE diagnosis; aware that she may be making frequent trips to the emergency room for attacks that resulted in swelling in her throat. Though it was difficult, she did her best to take her diagnosis in stride. She quickly informed herself about the disorder and worked on figuring out the best way to manage her condition. Watch her video about being diagnosed below.
Not too much later she shared a video describing some of the hard realities of HAE; having to learn what potential triggers were, what to avoid, and how to handle her attacks. It was difficult to handle the frequent attacks and hospitalizations.
Her video about this part of her journey genuinely shows how emotional an HAE Journey can be.
Almost a year later though, Amanda has found more peace with HAE. She no longer has HAE hanging over her shoulder as a constant worry, and this reduction in stress in turn, has helped to decrease the frequency of her attacks. She is determined not to let HAE get in her way, or as she puts it, “I have HAE but it doesn’t have me”. Watch her video below.
Thanks for sharing your story Amanda! Keep on inspiring!
All content sourced from Allergic Amanda