TAMPA, Fla. — If something feels off in your body, it can often feel frustrating until you find someone who will listen and help.
Once a Florida woman found a doctor to hear her concerns, she learned she had a rare disease.
Jocelynn White said she felt healthy until about five years ago when something felt off with her heart.
“So when you said you were going to the emergency room because you weren’t feeling well, did you think you were having a heart attack?” asked ABC Action News anchor Lauren St. Germain.
“Yeah, yeah. Because my heart was doing all kinds of crazy things. And also having other physical symptoms at the same time – tingling, chest pain, and whatnot,” said White.
White’s dad and sister have a rare genetic cardiac disease called LMNA Cardiomyopathy.
“I really want to be checked out and taken more seriously because my dad has this really serious heart disease. [They said] ‘Oh no, you don’t have that. You don’t have that,'" said White.
After going to see several different doctors and undergoing testing, White found out she has the genetic disease as well.
“I would read article after article after article about my actual disease and then I would look in the footnotes to the doctors that contributed to the study and research each one of them,” said White.
Eventually, she found a doctor at Tampa General Hospital who was willing to take her on as a patient.
“Finally, I was heard. I think a big part of this is not being taken seriously or not being heard,” said White.
Dr. David Wilson is one of the doctors now treating White. He is the Electrophysiology Section Chief and Medical Director of the Tampa General Hospital Electrophysiology Center of Excellence.
Dr. Wilson explained what patients with this disease feel when they are experiencing abnormal heart rhythms.
“You can feel skip beats. You can feel a change or pressure sensation in your chest. Sometimes in your throat, just associated with the heart, sort of beating, erratic and irregular. If those arrhythmias were to last a long period of time, that’s when you can be prone to actually feeling near faint or passing out,” said Dr. Wilson.
Last Fall, the FDA approved a procedure to implant a device to help patients like White and, earlier this year, Dr. Wilson.
“The device is called an EV ICD. It’s an extravascular ICD [Implantable Cardioverter-Defibrillator]. It’s a novel type of device which is implanted in the armpit,” said Dr. Wilson.
He continued, “This device actually goes underneath your breastbone and puts the lead that communicates with the device sitting in the armpit underneath the sternum that allows for the device to both treat sudden, fast arrhythmias with a shock, if necessary, to save your life, but also offer sudden pacing, support or pacing therapies to try and terminate arrhythmia without having to shock it.”
It's a device White can see and feel as a reminder of how she found when something felt off.
“Become your own patient advocate because some doctors are just going to treat and discharge you but there could be something else that is really going on,” said White.
