February 1st 2022 | 5 minute read
Mike and Missy Mallory
Talking about your Hereditary Angioedema (HAE) diagnosis to others may not always be easy. Whether it includes friends, family members, significant others, or co-workers, finding the right time to discuss your condition can be extremely difficult and bring up feelings of stress and anxiety.
Hear from Mike, an individual with HAE, and his wife and caregiver, Missy, as they describe their own perspectives regarding their HAE journeys, how it impacted their decision to start a family, and more.
Q: How were you first introduced to HAE?
Missy
I had never heard about HAE before I met Mike. He would often cancel plans we had, stating he did not feel well, but it was not a cold. After a few times of him canceling, I found myself pretty curious about what was happening. I came by his house during one of these times and he was curled up in bed. He asked me to just sit with him, explaining how it was very painful to him. I sat on the floor next to him and held his hand for hours, being as still as I could, knowing any movement of the bed would be extremely painful. I knew then, holding Mike's hand while he slept or squeezed my hand due to the pain, that I wanted to hold his hand through all of his attacks.
Q: Did an HAE diagnosis affect your decision to start a family or have children?
Mike
HAE did not affect our decision in any way to have children. We knew the 50% chance of passing HAE along to a child, but that concern did not become a reality until Missy was pregnant with our first child, Stephen. At this time, there were no safe approved HAE treatments. It had become normal for me to find a way to work through attacks. However, one major throat attack changed our entire outlook.
I had woken up with a scratchy throat but didn't think much of it. As the morning went on, I noticed the scratchy throat was actually a laryngeal HAE attack. Knowing there was no treatment, I continued working. By early afternoon, the swelling had reached a point where I could talk, but could no longer swallow. As my oxygen levels dropped, it became harder to work. I finally agreed to visit the local emergency room. As expected, the hospital staff and physicians had never seen or heard of HAE and panicked. I was sent by helicopter to a larger hospital. I could no longer speak and it seemed like every doctor in the hospital wanted to look at me. Fortunately, while I was in the air, they were able to reach a knowledgeable HAE treating physician who provided a few treatment options.
When I walked out of the hospital the next morning, I was determined to find the name of the doctor that saved my life. I was even more determined to find a way to make sure my unborn child would never have to experience HAE attacks. I actively participated in any clinical trial I could, hoping to ensure a brighter future for Stephen, if he had HAE. A condition of the clinical trials that I participated in was that you would agree to not have children during the trial. Because of this, there is a seven-year gap between our first and second child! This seven-year gap has allowed time for treatments to be developed and approved. Our youngest child, Abby, has been diagnosed with HAE. However, with the multiple HAE treatment options available to her, and the many more in development, I am confident she will not experience HAE in the same way I did when her attacks begin.
Q: Are your children aware of your diagnosis? How have you described HAE to them?
Mike
Our children are very aware of HAE. Our eldest son, Stephen, was forced to grow up quickly as my caregiver. He learned first-hand about HAE. When he was young, before there were treatments, I would have multiple attacks per week. He would take care of me when I had a painful abdominal attack, forcing me to curl up in a ball on the floor, or when the bottoms of my feet would swell so badly that I couldn't walk. During clinical trials, I would go to the hospital in the middle of the night for treatments and he would wake up in a strange bed, not knowing how or why he was there. Going to sleep in his bed and waking up at his grandma's house became a regular thing for him.
For our two younger children, their HAE learning experience has been much different. My current preventative treatment has been very effective at controlling my HAE attacks. We have educated them about HAE, and they have been very active in the HAEA's youth programs, but they have never experienced an HAE attack first hand. While writing this I asked our youngest child, Abby, "How did you learn about HAE?" She responded, "I don't know. Ask Lisa, she knows everything about HAE!" She is referring to Lisa Facciolla, Community Engagement Specialist and youth program leader at the HAEA, who has created many programs and activities to help the HAE youth community learn about and cope with HAE.
Q: What advice would you give to other HAE caregivers?
Missy
I would greatly advise other caregivers to learn as much as you can about HAE. I have been Mike's caregiver for over 16 years and provide him the care and assistance he needs, yet I continue to learn more about HAE along my journey as a caregiver. I use a three ring binder to organize all my notes, treatment calendars, and attack logs for both Mike and Abby. I am always watching signs of an attack starting. I encourage all caregivers to write down any questions that you may have before doctor's appointments. Utilize support groups the HAEA provides to help you navigate being a caregiver. Discussing our own stories has greatly helped me in my journey as a caregiver. My final advice is do not forget about self care. Remember that you are important and you should take time for yourself whenever you can!
Q: What advice would you give to other individuals with HAE?
Mike
Be proactive! Hereditary Angioedema is an extremely rare and unpredictable condition. Even though there are several treatments available, and the HAEA is actively spreading awareness, most doctors and hospitals are unfamiliar with the condition. Find a knowledgeable HAE treating physician that works with you to develop a treatment plan. Keep track of your treatments and your attacks and communicate with your physician. Order ER tool kits from the US HAEA and personally deliver them to your local EMS. Introduce yourself, explain what HAE is, and how they may be able to help you during an attack. This is a much more effective conversation when you are feeling well than during an attack. Do the same with your local emergency room. Stop by a few times each year as their staff does change.
I also encourage everyone to get involved! The US Hereditary Angioedema Association was founded by, and remains run by, a group with a passion to improve the quality of life for those living with HAE. We are all in this together. The HAEA offers many programs to advocate, spread awareness, meet others in the HAE community and support each other.