Ann Trussell joined the Cure HHT Board of Directors to help ensure the next generation of HHT patients don’t experience the pain and struggles of generations past.
“My promise to my daughters is that as long as I’m able, I will do everything in my power to find a cure,” Ann says. “Children are being born with HHT every day. We owe it to them to do better!”
For Ann and her family, as is all too common with HHT, so many signs and symptoms were overlooked for years. A diagnosis didn’t come until her youngest daughter, Lauren, was born.
Lauren suffered a stroke in utero, and doctors were never able to pinpoint why. As she got older, Lauren began passing out and turning blue. Again, no one seemed to know why. One day when Lauren was 9 years old, it happened and “she wasn’t coming back to us,” Ann remembers. Lauren was taken to Children’s Hospital of Philadelphia’s cardiac care floor where a chest CT would reveal a massive AVM in Lauren’s right lung. Dr. Scott Trerotola, Director of the HHT Center of Excellence at UPenn, was called to review the scans.
The AVM virtually consumed all of Lauren’s lower lobe and was leaking. Her oxygen levels were dangerously low, and the AVM was causing issues with her heart. In all, Lauren would go on to have 13 embolizations. The treatments would bring relief – but only briefly. Symptoms would return after a few months as Lauren and the AVM grew together. Eventually, continuing to embolize was no longer an option. The difficult decision was made in 2013 for Lauren to have a lobectomy to remove part of her lung.
“After the surgery, we had a different child,” Ann recalls. “She was pink, her oxygen was 99, and she was able to think clearly with all the oxygenation. She was the kid we used to have.”
Lauren’s diagnosis provided answers to the family – like why, when Ann was a child, she spent 30 days in Children’s Hospital of Columbus where doctors conducted countless tests and scans to try to identify the cause of her dangerously low hemoglobin of 2.1. Ann’s father and oldest daughter, Kelly, would also be tested and found to have HHT. The diagnosis, however, wouldn’t prevent future tragedies.
Ann’s father, Phil Sponsler, was diagnosed with Leukemia in 2009. Ann pleaded with her father’s oncologist to wait before administering chemotherapy so she could talk to a specialist at an HHT Center of Excellence to learn what drugs would be best, but the doctor wanted to proceed immediately. Tragically, her father bled to death just 12 hours after his first chemo treatment.
“It’s why advancements matter,” Ann says. “We need to not only advance how this disease is cared for, but advance how readily it’s understood – and not just by ENTs, but the medical community at large. Patients today deserve better outcomes than what’s happened in the past. When my father died, there weren’t the resources like there are now that could’ve helped.”
Ann wanted to share her story to convey a message of hope. She is deeply optimistic for what the future holds: “Our community deserves progress – and not over decades, but progress yearly,” Ann says. “Ultimately, curing this at the cellular level is the goal. I’m not sure a cure will happen in my lifetime, but I think a near future exists where my daughters can take a pill to manage their disease or keep their AVMs from rupturing. A lot of pharmaceutical progress is happening. We’re just beginning to scratch the surface of what research can do for us. Perhaps now more than ever, your donations will help propel us forward in such monumental ways. Have hope!”