Hello! My name is Jake Conaway and I have lived with HAE for 30 years. I was diagnosed at birth, as it was known in my family due to my father, his father, and both his sisters having confirmed diagnoses. How HAE became known in my family is rather bleak. In 1972, my aunt Susie passed away from an occluded airway. She was found by her young children with an EpiPen next to her. She was a nurse for many years. Her death was ruled suspicious, and following an autopsy and blood work, her death was attributed to HAE. Following this, my entire family on my dad's side was tested and ruled to have HAE except my grandmother. My father was 17 years old at the time of his diagnosis but had been dealing with severe symptoms even before his diagnosis.
Fast forward to August 31st, 1995. I was brought into the world by my two loving parents. Both successful Police Officers with the Tacoma Police Department. I was tested at birth and within two weeks, my parents knew that I too had HAE. By the age of 6, I was very familiar with HAE. My father had semi frequent ambulance trips and we as a family spent lots of time in different hospitals with different doctors trying to learn how to manage his symptoms. To clarify, I wasn't so much familiar with what HAE was, more on the impacts it had on my father and our family as a whole. I was too young to understand much more than that dad was sick with a very rare disease that plagued him with frequent episodes of swelling.
When I was just around 7 or so, my father’s kidneys began to fail. Doctors attributed the decades of steroids he was immediately prescribed upon his diagnosis at 17 to be the factor of causation.
A transplant was immediately requested and hundreds of his fellow officers volunteered as potential donors. A match was found and a successful transplant occurred. For months my father found a new life. I have vivid memories of playing baseball with him again and traveling to the coast for vacations. My father also began new studies and trials to treat his HAE. Life felt normal again. My father was back and things looked bright!
However, on a morning in July 2003, I woke up to another ambulance at our house. I came out of my room to find my father loaded onto a gurney. Something I was used to seeing, but it had been quite some time. I was confused, but somewhat callous to this sight. I told my dad I loved him, gave him a hug and said see you soon with the confidence that I would just like every other time.
My father passed away that evening surrounded by his wife and close family. I learned of the news myself the next morning.
3 months later, I was beginning my studies as a second grader. My handwriting was terrible, but I thrived in my historical studies as my father had instilled a love of a good History Channel documentary in me. One day I noticed it was hard for me to grip my pencil because my hand was swollen. I went to the school nurse and with no clear explanation, they called my mom.
Now, I don’t exactly remember the moment of her telling me I had HAE. What I do remember is making the distinct comment, “I have a little bit of dad in me, I guess.”
For years after that, I began my own battle with HAE. I started my first pharmaceutical trial shortly after my symptoms started and continued on many many different trials throughout my teen and young adult years. I struggled badly in my teens with attacks and was hospitalized often. I tried to live as normal a life as anyone, but being a 3 sport athlete that had to get bi-weekly infusions of medicine was tough. In 2016, I started a new trial for a bi-monthly injectable treatment. I saw a ridiculous reduction in symptoms and have been living my most “normal” life ever since. I still have attacks from time to time but have had a steady career in Corrections and Wildland firefighting for 9 years.
Now to the main reason I was asked to write this blog! My son Christian Jake (CJ) was born a little over 2 years ago. While my wife was pregnant, we met with a handful of specialist doctors to discuss his possibility of HAE. While we know that him having it was a 50/50, we discussed with doctors exactly how early we wanted to know. Talks of a blood test while he was still in the womb were on the table, but given the blessing of modern treatments and the relatively low risk birth we decided to wait till he was born. However, 3 days after he was born, local doctors told us that in order to test him, they would need a large amount of blood. While part of me believed that a second opinion to see if this was true wouldn't be a bad idea, my wife and I felt comfortable waiting till the suggested 1 year mark when getting blood from him would be easier. In his first year, my son really struggled with colic and other stomach problems. Our pediatrician assured us this was normal, but part of me always feared it was HAE related issues. While our pediatrician is awesome, every time we talked about HAE with her and our son, she almost seemed to brush it off as something we had read too much about on WebMD and that we shouldn’t be too concerned as it was “very rare.” Instead of pushing the issue we decided to be patient and wait for blood work.
When it came time for him to be tested, our pediatrician wasn't even quite sure what to order for blood work. My first HAE doctor was long retired, but we had always stayed in touch. I reached out to him and after a quick phone call between him and our pediatrician, everything was lined up for my son's testing. Two days after his 1st birthday, we went to our local lab. I wasn't really sure what to expect, but I figured blood tests on 1 year olds had been happening for centuries and a quick and relatively painless system would be in place. When our number was finally called, we stepped back into a simple station with no more privacy from anything else than a curtain between us and everyone else. Two very sweet nurses explained that the way I had gotten my hundreds of IVs and blood draws would be the exact same way my one year old would get his. Right on the inside bend of his arm. Now, my son is a very energetic happy go lucky kid that won’t sit in one place for 30 seconds, unless there's some really tasty food involved. When they told me I had to hold him tight in my arms, I laughed. They didn’t.
I knew this was something very important, frankly the most important moment to date in his life and certainly mine. As I held my son tight against my chest there was laughter at first, as if we were just playing a game, but as I watched the nurse approach, laughter turned to tears of fear. As I held him, I felt like the worst father in the world. Minutes felt like hours as I fought back my own tears. The first poke was unsuccessful and I didn't know if my heart could bear another one. As my son calmed down and caught his breath, my heart raced because I knew we had to try again. This time as I held him tight, there was no laughter. And I couldn't hold back my tears anymore either. Finally, enough blood was collected and it was over. It was one of the worst experiences of my life.
It's funny what ice cream can fix though. 15 minutes later in a McDonalds parking lot it was like his whole world was right back to normal. Oh to be young again, right?
Two anxious weeks went by and finally the phone rang. Our pediatrician led off by telling us our son's iron levels were normal. We rushed her along to get to what we really wanted to hear. As she told us all his levels were normal, my wife and I both broke into tears. With tears in our eyes, our pediatrician carried on about his histamine levels and some other big words. Oblivious that she had just given us the best news we could ever hear. We weren’t surprised, but we thanked her and hung up.
The whole process reminded me that oftentimes we are our own biggest advocate. 30 years, 3 family members lost to HAE, and doctors still don’t always understand and that's okay. That’s why we who have a voice and can speak our stories must never stop! And to those out there who are still timid or anxious to speak, that's ok! There are many of us who would drop everything to help, and there are so many who work tirelessly every day to speak for those who can’t!
Finally, to whomever is reading this, thank you for taking the time to hear my story. I hope and pray my words can help even one person who reads this. You’re never alone in this community! And to the HAEA, I thank them for giving me this platform and for all they have done for me and my family for all these years!
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