LIZ: I work on ending homelessness, and now I've worked for the same nonprofit many years and now serve as CEO. The mission of our nonprofit is to unite the community to end homelessness, one life at a time. I get a front-row to human goodness in my seat. Sometimes people think the work would be distressing or depressing, but instead you get to see courage and resilience, and you also get to see a community who cares.
LIZ: Living with HAE, hereditary angioedema, has given me the strength to never give up. I was 9 years old when I had my first HAE attack. Most of my attacks were intestinal attacks and so I would miss 2-3 days of school with some regularity, like typically once a month. I mean, I was out, I couldn't move. I would often get to the point of dehydration with the amount of vomiting. So stress is an important kind of predecessor to this. Stress is often a trigger. I would get a hand swell. A hand and foot swells might be frustrating or a little embarrassing or feel awkward. But that feels so much more manageable than when you have an intestinal swell.
LIZ: My father and my sister had experienced these same symptoms. My dad's had a couple throat swells. Actually, we're quite lucky he's still with us. We made dietary changes, we made, you know, physical health changes, and just worked together to try to be in an overall better place, which didn't stop the attacks, but it did seem to make them more manageable. However, our symptoms were simply shrugged off as being part of the family sickness. We didn't know that we had HAE. But once we got diagnosed, looking back was when we realized all these things are related.
LIZ: As my personal journey continued, my intestinal flare-ups got worse. I was having a severe attack, and I really felt like I was dehydrated. I was vomiting so much, so I went to urgent care, and they were having a hard time giving me an IV. They sent me to the ER, and in the ER, they ran a scan and came into my room and said, "You're having an intussusception where your intestines fold into another section, causing a blockage. We're gonna operate right away.” And so they removed a little less than a foot of my intestines. I can remember waking up and thinking, they're gonna have seen something. They're gonna know what I have, and hopefully it's not cancer. I didn't have cancer. But they didn't have a name for what I had, but said you might want to go see a specialist and get some testing.
LIZ: After my surgery, both my sister and I went through testing to see if we could understand what was happening in our bodies. It wasn't until 13 years ago, and I was eight months pregnant with my son. My sister finally found a doctor who listened and paid attention to her distress. He ran a blood test for HAE, and it confirmed the diagnosis. And she called and said, "I know what we have." And all of these years of suffering, all of these experiences, and they can just be summed up in these two words, hereditary angioedema. It was a relief, I was excited that it finally had a name, I was affirmed.
LIZ: And then to know that we could have a management plan, right? That there were doctors who were experts in this, and we could find a path forward on how to manage this illness, that filled us with hope. In our minds, the stomach sickness had nothing to do with the hand and foot swells, right? But suddenly, when you read about hereditary angioedema, all of these things started fitting together, and we could understand our bodies in whole new ways. So, right around the time my son was born, I really began my journey with a management plan, living with HAE.
LIZ: There are three types of HAE, Type one, Type two, and HAE with normal C1 inhibitor, also known as Type 3. I have low levels of the C1 inhibitor protein, Type 1, which is the most common type. My management plan has evolved over time, and I'm happy to say I found that preventive treatment works for me. With myself, my dad, my sister, my son, having HAE, it truly is a family affair. I've done a lot of growing, learning how to advocate for myself, and now I feel like I'm much more of an active partner in my own management plan, and I'm really teaching my son and trying to model for him how to do the same.
LIZ: I went years without knowing about HAE, and now, I belong to the HAE community, where we have live gatherings and social media platforms. There's even youth gatherings for young patients like my son now. But HAE is such a rare disease, there's still a lot to be done. It's so important to have a good healthcare team too. I feel like I have hit the jackpot with the current doctors I have. I am so grateful for the life I have, so I have purpose in my work. I wake up every day committed to ending homelessness. I have such joy in parenting, and then I have this amazing 12 year old that I'm getting to journey with.
LIZ: I'm determined to not let HAE stop me, and certainly not my son. My mission is still, and will forever be to help others.
