I have dreamt about my death, which makes me appreciate life more.
Growing up in Trinidad and Tobago, I was always aware that heart disease was prevalent in my family. I always considered it normal, as I knew so many families in my community that had lost loved ones at a young age to heart attacks and strokes. Health wasn’t spoken about as a priority in my family. However, my dad always emphasized the importance of family history and inherited genetics. For the short 7 years I knew my grandmother, I remember her constantly being sick, but I didn’t understand the significance of her illness until I was much older. I wouldn’t learn until much later that Familial Hypercholesterolemia was what was running through my family.
My family may not have had much materially, and we did not have time to spare with each other because of early family heart disease, but we deeply cherished the little we had. There was always a sense of urgency in the time we shared and I felt lucky to have a strong connection with my dad. I am the epitome of a daddy’s girl. We had every conversation you could think possible between best friends. He shaped me into the person I am today. He ensured that no matter what, I would be independent and self-sufficient.
When I moved from Trinidad and Tobago to attend school in Massachusetts, we both knew that even though we lived countries apart, we were missing each other for the right reasons. I know that sounds like the dream of each parent, to watch their child grow up, have more opportunities than they did, and be independent and successful. But my dad would always add an ominous note to this desire for me. He would always say, “Once you graduate UMass, Amherst, I can peacefully close my eyes.”
I hated when he said that. I would immediately say, “Stop putting that energy into the world. You have to live forever with me. How else are we going to take over the world together?” Sadly, his words would become true. So said, so done. Soon after I graduated, moved to Boston, and secured my first permanent job and apartment, I got the call that changed my life. My dad had a massive heart attack. I returned home as fast as possible and prepared myself for the beginning of the end of our time together. After one month, he lost his battle and I was alone.
I lost my whole world the moment my dad took his last breath. At first, I blamed him for leaving me behind. He knew he suffered from multiple strokes and heart attacks during his life so why would he not keep going to the doctor, right? Back then, I did not understand that it was his way of coping with his reality. I think he felt it didn’t matter, because his statin medication did absolutely nothing for him. It never helped his numbers and I believe he may have thought the only solution was to live his best life with his heart and soul.
But heart disease and stroke did not take only my father. My grandparents both passed away from massive heart attacks before my father passed away at age 59. Two of my elder brothers experienced a stroke and a heart attack in their 20’s. Later came my own stroke. I was only 28 years old.
Before my stroke, I was alone in this world as a 22-year-old girl, just out of college. I was dealing with the grief and loss of family, and the medical bills they left behind.
In honor of my dad, I returned to the USA after he died to pick my life back up. He knew that sending me to the USA, I would have access to the best resources. A parent’s goal is to ensure that your children are in better positions than you socially, economically and most importantly educationally. After I lost my dad and my 25-year-old brother had his first heart attack, I started to religiously check my lipid profile. To my dismay, my LDL cholesterol was well over 300 mg/dL – more than three times the normal level. My doctors in Massachusetts attributed my numbers to anxiety and grief. They saw a 90lb, active, vibrant young woman in front of them. My numbers did not seem to faze the experts even after I started taking a high-dose statin and they didn’t come down. I was told that it was just my natural body and I should just be mindful of my lifestyle and make good diet and exercise choices.
While dealing with these medical worries, the chance of a lifetime came my way when I got hired to work at New York University. I moved to the Big Apple in 2019 and changed my medical team. My new cardiologist saw my numbers. Unfortunately, he lowered my statin dose. At the same time, he advised that if I wanted to have a family, I should try to have children when I was younger, as I’d have less risk now with how high my cholesterol was. It was shocking to hear this and made me anxious, already having to consider these life choices at such a young age. I just wanted to get my cholesterol in check before anything else, but my LDL cholesterol was still over 300 mg/dL.
During the Covid-19 pandemic, exactly 6 months after starting the lower statin dosage, my left hand went numb during my lunch on August 26, 2021. I had my first Transient Ischemic Attack (TIA) – a kind of stroke. Most people might have been furious, scared, and upset. But truthfully, I was, and still am grateful. This triggered the serious attention I needed and my cardiologist recommended that I see an endocrinologist at NYU Langone. My new specialist finally gave me a name for what my family had - Familial Hypercholesterolemia, or FH. This diagnosis led to getting the treatment plan I needed. My specialist put me back on a higher dose statin and added a PCSK9 inhibitor. My LDL cholesterol levels finally came down and now, I’m relieved to say, my LDL cholesterol is under 50 mg/dL. This was my blessing in disguise.
Shortly after learning the correct name for my condition, I did what anyone would do… I Googled it! This was how I connected with the Family Heart Foundation and found the most amazing group of people. I was grateful to feel connected to a community of people who shared my fears, questions, and concerns. I was no longer alone.
The Family Heart Foundation posted that they were looking for volunteer Advocates for Awareness and the training date was on my dad’s birthday. I think it is safe to say, the stars were aligned at this point. I signed up for the training and met my second family who changed my world.
All of this is happened while the world was moving rapidly. In New York it was the middle of the Black Lives Matter marches, vaccine roll out, and experiencing the divisive political climate. The hot topic in New York and at work was equity in healthcare. My job at NYU is focused on research in dementia, and we are concerned about the lack of diversity among research participants in this area, as in much of healthcare.
I knew that I could have an impact on the diversity of stories in the FH community if I shared my story and advocated for FH awareness in the Caribbean community. My personal mission is to help Caribbean people in America get their cholesterol tested. I know how I have struggled with the loss of my family and my own health, and I don’t want others to have to go through what I did. Heart disease does not discriminate, so we need to ensure the research, the diagnosis and the treatment are not biased. Everyone needs to know that there is medication, there is support, it is safe, and most importantly it can get better.
For the first time, I have been having dreams about living, and I am more grateful than ever.
Advocate for Awareness Aditi Durga will be speaking at the FH Community Forum, December 11.
Advocate for Awareness
Family Heart Foundation