Hali was diagnosed with Danon disease, prompted by an ER visit that led to genetic testing
Hi, I’m a 35 year old woman named Hali who is living with Danon Disease. I have an identical twin sister named Ayla who also has Danon, but is not as far along in the progression of the disease as I am.
Hali and her twin sister, Ayla with their “LAMP2” (top); time outdoors doing what they love (bottom)
I first learned about my heart issues after a visit to the ER resulted in a week long stay at Mission Hospital in Asheville North Carolina. I was sent to the ER from my primary care doctor on Nov 12th 2025 with symptoms of what I thought was heartburn, shortness of breath and a rapid heart beat. I underwent a multitude of tests in the hospital and I learned that my EF was very low, I had significant scarring on my heart, I had a blood clot, there was fluid on my chest, I was in atrial flutter and I had SVT. I ended up getting surgery for an ICD (Implantable Cardioverter-Defibrillator) in order to help prevent the possibility of sudden cardiac arrest.
Amidst all my testing I got a genetic test and after a month of waiting the test results came back positive for Danon Disease. My heart disease diagnosis came as a complete shock to me as I’ve always considered myself to be a very healthy individual. The only other time I’ve been to a hospital was in 2011 for an irregular EKG and signs of mild hypertrophy, which doctors deemed atypical but not life threatening.
“My new health reality has been difficult to accept as someone with a lot of big dreams and life goals. The big unknowns of living with a disease that is progressive and could lead to more advanced therapies like heart transplant is incredibly daunting. My diagnosis has also greatly impacted my friends and family as they have been helping me navigate the mental, medical and financial logistics of the situation. “
I ended up moving into a cabin on my moms property because of my lack of financial stability due to working less. I stopped drinking alcohol and have been consuming very small amounts of caffeine and salt. I’m consistently struggling with feeling tired and also have been told to not get my heart rate above 130 bpm, so most forms of strenuous exercise have not been possible. I have been told that I should not have children with the current state of my heart and with the possibility of passing down the genetic disease. This has been a huge life shift for me as someone who has always wanted a family.
Since November I have been taking several heart medications and have been doing check in tests with my doctors in Asheville NC and at Duke in Raleigh/Durham to see how the symptoms of the disease are shifting. The future of my heart health is unclear with so many variables in the mix with how quickly the disease progresses in my body, advances in gene therapies and new advances in heart health technology. It has been a rollercoaster learning about my heart disease diagnosis and trying to navigate life with it. I’m trying to remain hopeful for the future, not only for myself, but for my twin sister Ayla and the rest of the Danon Community.
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