Coping with HAE: Looking at My Glass Half Full, Rather Than Half Empty

November 1st 2022 | 5 minute read
Katrina Hodges
I’m a country girl who spent most of my early years in the very small town of Alberta, Alabama. Spending time with my grandparents during some summer months was one of the best times of my life. I am now a grandmother of two wonderful kids whom I love dearly, a mother of two outstanding adults, and a wife to an amazing husband.
As a child, life was simple. I didn’t have a real care in the world, other than trying to understand why I had days where my feet and hands would swell badly. I remember I started having swelling issues around the age of seven years old. My mom would think that I ate something causing a reaction or I touched something outside while playing that I was allergic to. As the swelling episodes got worse and doctors couldn’t help determine what was going on, I became more and more isolated. I was unable to go outside, play with friends, and missed days of school. As I got older, the swelling issues got worse. This caused me to not only struggle with life in general, but also in school and with friends. I can remember missing days of school and falling behind on assignments, eventually causing me to have to repeat the second grade. This also restricted me from keeping friends as I couldn’t do the things “normal” kids did, such as play sports or go to many social events. Because my mom didn’t allow me to do much in fear that I would swell, I spent a lot of time as a child at home inside the house. It was like I was living like a kid in the bubble.

Life was a huge struggle growing up when dealing with swells because I didn’t know what was wrong with me, and I didn’t have medication to help me. I had to learn how to deal with swelling episodes weekly as best I could. It was so depressing. I cried many days and nights and prayed constantly for God to help me. I would continue to randomly swell into adulthood without knowing what was wrong with me. I would have episodes in my hands, arms, feet, legs, genitals, buttocks, face, lips, eyes, you name it. If it's a part of my body, it most likely has swollen at some point in my life. The hardest swells to deal with were always throat swells, because I had no treatment. I would stay up all night, because I was afraid to fall asleep in fear that I wouldn’t wake up. I would drink hot tea to try to help me deal with the swelling, taking little sips at a time. It was rough, but I didn’t know what else to do because going to doctors or to the Emergency Room (ER) was worthless, so I didn’t go. Not many doctors, hospitals, or nurses have even heard of Hereditary Angioedema (HAE). I spent so much time in the ER and at doctor offices with no results.
Taking matters into my own hands, I began keeping a journal to see what I was eating or doing prior to swelling and logged it as a possible trigger so that I could avoid it. I stopped eating red dye, meat, salt, and many other things trying to find a solution, but one wasn’t found. If anything, HAE made me a tough chick. I can even recall multiple instances where I would work on days that my hands were so swollen that I couldn’t even type or hold a pen or trying to work with swollen lips because I missed so many days that I didn’t have any more sick leave time to take.
I went to therapy to help deal with my emotions because I was such a mess thinking that God was punishing me for something. Finally, when I realized that I had to do something to help myself because I was a single mother with two kids that needed me, I found determination to search and search for answers. One day after church, I was sitting in my bed and searching the internet while also getting over a bad swelling episode. I googled swollen feet, swollen hands, and uncontrollable swelling. A picture popped up of a girl with a before and after picture showing her normal self and her swollen self. I instantly felt relief because she looked like me when I would swell. This is how I first learned about HAE and the HAEA. I sent an email requesting more information and a representative contacted me to tell me more about this illness. I was connected to a doctor to test me and my kids for the illness. I tested positive for HAE Type I, along with my daughter, while my son tested negative.

Finding out I was positive was like a breath of fresh air. It opened me up to finally being able to get medication to treat the illness. Getting medicine really changed my life for the better. I was able to keep my condition under control. My first medication to treat attacks was an on-demand IV treatment. These were rough. Over time, my veins gave up and I had a port put in to ease administration. This also ended up being a disaster. Luckily, because of all the research that was being done, more treatment options became available that didn’t require access to my veins through an IV.

One of the best things that helped me navigate understanding my illness and treatments was the US HAEA. Previous HAE Advocate, Jenny Barnes, was the best! She helped me understand treatments, counseled me when I was down, and helped me find an HAE treating physician.
I am so grateful to have stumbled onto the HAEA Facebook page during my initial search. With the help of the wonderful leaders and volunteers of the Association, I have been able to try new medications that make living with HAE better. After 18 years of being in the professional world, I had to leave my career due to ongoing health issues and am now disabled. However, I can truly say I’m living some of the best days of my life despite my health issues. My belief is to simply accept things as they come and to remember that in the midst of all things, there is something to be grateful for. Even though I’m now disabled, I don’t feel defeated anymore or that my glass is half empty. I’ve decided to look at my glass as half full and am able to find ways to fill it up, because of the support of the HAEA, my doctor who has been treating me for 15 years, and my family who keep me motivated.
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