HAE – Hereditary Angioedema, is a condition I have known and seen all my life. My dad, uncles, all my male cousins have lived and are living with it. HAE is a very rare and life-threatening condition, with swelling in various body parts and excruciating pain and no cure. From my childhood, I saw my father rushing to the hospital and in constant pain, so much that he got addicted to pain-relieving gels. My cousins and uncles were no different but only worse. Every 10-15 days my dad used to get sick, vomiting for hours continuously. We roamed to every hospital we could and hoped for a cure, at least a diagnosis. But nothing popped up for years. Later we were told by a doctor that it could be HAE, but there are no tests available to confirm. One day my dad got a heart attack and weeks later diagnosed it to be an HAE attack. Then we understood the seriousness of this illness.
In my teens, I misinformed that HAE does not pass on to women. So, for years we ignored all my symptoms and thought it was food poisoning or something else. As a result, it took a few years to get diagnosed. I lost one of my cousins and a dear friend a few years back because of a Laryngeal attack that led to asphyxiation. Although it was nothing new to them, and they handled it for years, the swelling was occurring rapidly and they couldn’t rush to the ER on time. I was shocked, devastated for losing them but also saw a little future of mine in it.
After a few months, my doctor told me that he found a lab that could do the testing. It cost me Rs 14,000 for the initial tests and I wanted to know more about it. So that is when I found genome sequencing. It was very expensive and found that there are 13 links missing in my DNA, and is the cause of HAE.
I was relieved to know that I have a diagnosis and also worried because my symptoms were worse than my father’s. I have reached out to many doctors, to know how HAE works and what causes it. There is no cure, and we do not have modern HAE treatments in India, so I rely on painkillers and grew immune to antihistamines. For years I did not know how to handle HAE attacks along with the hormonal changes that were happening to me, as a result of the side effects of the medication I was taking. I was admitted to the hospital every month initially, for days, putting n-number of injections in me.