At AdventHealth Sebring, a groundbreaking new screening program is giving patients a better chance at catching Cardiac Amyloidosis early.
(From L-R) Amyloidosis research team: Dr. M. Majid, Research undergraduate assistant A. Huang, Dr. Y. Pleshkova, Dr. S. Punjani, Dr. D. Bhandare, Dr. J. Passi, Dr. T. Shimshak
— SEBRING, Fla. -- 90-year-old Nancy Macklin of Avon Park said it was a regularly scheduled echocardiogram of her heart at AdventHealth Sebring that led her to be diagnosed with cardiac amyloidosis, a little-known but potentially deadly condition that can lead to congestive heart failure.
Now, she’s working to make sure other people know about the condition, so they can be tested for it and get potentially life-saving care.
“If I can help anyone else, I want to do it, because I feel like my life now has been extended to where it might have been,” Macklin said.
Cardiac amyloidosis is a rare condition where abnormal proteins called amyloids build up in the tissue of the heart. These are proteins the body cannot break down and recycle as it does with normal proteins. As the proteins build up in the tissue, the heart muscle thickens leading to the heart struggling to pump. The condition often leads to heart failure, other organ failure and eventually death. The proteins can also build up in other parts of the body including the kidneys, liver, and nervous system causing serious health problems.
At AdventHealth Sebring, a groundbreaking new screening program is giving patients a better chance at catching the disease early, getting the right diagnosis and starting treatment sooner. Led by Dr. Deepti Bhandare, chair of cardiology at AdventHealth Sebring, Lake Placid and Wauchula, this program is the first of its kind in AdventHealth’s West Florida Division. It’s also one of only a few clinics in the entire country offering the same level of diagnostic workup and comprehensive treatment.
“This is an underdiagnosed condition, so we want to bring as much attention to it as possible to members of our community so they can be screened for it and get on a treatment plan if needed,” Dr. Bhandare said.
Cardiac amyloidosis is often underdiagnosed or misdiagnosed, leaving patients struggling for years before receiving the right treatment. Research shows that many people spend up to four years searching for answers. Studies also show that misdiagnosis often happens in more than half of all cases.
Macklin said she’s grateful that her condition was discovered when it was, because she believes the treatment she’s receiving is helping her and allowing her to continue making precious memories with her family. She’s a mother of two sons and a daughter, a grandmother to seven children and a great-grandmother to four children.
“I think that having caught it is very beneficial to me, and I can be with my family longer,” Macklin said. “I just had a very wonderful birthday in November and the children gave a big celebration for me with inviting friends from my past and family. It was just a remarkable time and something I’ll never forget.”
At AdventHealth Sebring, the program aimed at helping patients like Nancy Macklin is working extremely hard to diagnose cases in the community while also pushing to advance treatment for this rare disease.
“We have an exceptional team of doctors who want to provide awareness, access and answers for those patients who need them most,” Dr. Bhandare said. “We are also working to educate physicians, nurses and hospital teams to recognize the warning signs.”
Cardiac amyloidosis can present in many ways, but some of the most common signs and symptoms include:
• Numbness, tingling, or pain in the hands or feet
• Bilateral carpal tunnel syndrome
• Spinal stenosis
• Severe fatigue and weakness
• Shortness of breath
• Swelling in the ankles and legs
• Unexplained bruising or purplish patches around the eyes
Because these symptoms are similar to other conditions, patients need to be aware of the possibility of amyloidosis and receive specialized testing if necessary.
AdventHealth Sebring offers advanced, non-invasive imaging to diagnose amyloidosis without a cardiac biopsy.
“This program allows us to identify cardiac amyloidosis earlier and with greater accuracy, which is critical in preventing irreversible organ damage,” said Dr. Yelena Pleshkova, internal medicine residency team lead. “With a precise diagnosis, we can implement targeted treatments that improve patient outcomes and quality of life.”
Early diagnosis can be life changing. If you or a loved one have symptoms, getting checked could be the key to better health. For more information or to schedule an appointment, call AdventHealth Medical Group Cardiology at Call863-386-0055. You can also find out more details about heart care options at AdventHealth Sebring by visiting Heart and Vascular Care | AdventHealth.