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Marsha's Story

My name is Marsha and, for me, living with HAE is like continually trying to build a house of cards. With great care and deliberation you tentatively put each card in place – you try different strategies and plans and every conceivable modification you can think of to keep things in balance, and then a soft breeze wafts in, and the whole carefully considered design quickly collapses in shambles, and you have to start all over again.

I tried for decades to find a way to stop the agonizing abdominal attacks that began when I was 13 years old. After several doctors could find nothing wrong with me, I tried on my own to save myself. I began to make repeated dietary changes, I searched my home for toxic substances, I attempted to practice relaxation techniques that would eliminate stress from my life, and I made bargains with God. Each time I went a couple of weeks or more without an attack, I became hopeful that I’d finally found the solution. But every time my hopes were dashed. Soon I’d once again feel that familiar, yet indescribable, sensation that preceded my attacks, and again be plunged into the abyss of pain that accompanies an acutely swollen intestinal tract.  

It wasn’t until I was 35 years old and had been through many medical twists and turns that I finally heard the words “Hereditary Angioedema.” I was simultaneously relieved to learn why I got so sick, and horrified when I was told that the only available treatment for me was anabolic steroids – androgens. When the doctors told me what the potential side effects were, I struggled with the question of whether the treatment might be worse than the disease. I was willing to cope with these issues for myself, but when my daughter, Nicole, began to display symptoms, I would have gladly cut off my arm if it would spare her the suffering and lost years I had experienced. When she had to begin taking steroids as a teenager, I felt tremendous sadness and guilt that I had unknowingly passed this monster on to her. 

 When I received my diagnosis in the late 1980’s, there was no HAEA, and very little information was available. HAE was a dark, mysterious, sinister disease that I feared and despised. As the Association formed, grew strong, and new treatments were discussed and developed, I began to have hope that my daughter would have an easier life. When she received her first shipment of a new FDA-approved therapy, I felt a flood of gratitude wash over me. Nicole now capably and confidently treats her HAE, has control over her life, and is pursuing her dreams. I have also have an HAE treatment plan in place. Though not a perfect solution, my endless effort to build my house of cards has become unnecessary. I can open the windows wide, let the breeze come in, and know that we will withstand the storm.