The long road to answers for some chronic illnesses
By Addie Ratliff, Reflect Alabama Fellow
Samantha Balombiny knew something was not right. She had suffered from chronic illnesses since she was 12-years-old. It started when she began experiencing pain along with vomiting every day.
“Some of those things as a kid, I don’t know if I would have recognized they were abnormal, but as I grew older and I realized that it wasn’t something everybody else experienced,” Balombiny said.
She had several surgeries that were the result of being misdiagnosed. She had her gallbladder removed based on the diagnosis of gallbladder dysfunction. She had her appendix removed. Then came a diagnosis of endometriosis. She had a full hysterectomy at the age of 21 and most of those symptoms subsided, but she was not completely healed.
Though Balombiny, who lives in Kansas, has learned to deal with her circumstances, there are still millions suffering from chronic illnesses who need answers. One person who has been a voice for those people is Birmingham’s Kiera Chan, who is fighting an unknown chronic illness herself.
Chan is a PhD candidate at the University of Alabama at Birmingham and an avid researcher who is learning more about patient care, dismissals, and the relationships between doctors and their patients.
Chan believes she is “not just a faceless or nameless person.”
“This is my life, this is my career, this is my passion,” Chan said.
Through her research on patient care, she started an Instagram account where she has been able to reach others on how to advocate for themselves in a medical setting. Chan has given tips on filling out patient forms, finding the root causes of symptoms and navigating insurance networks, among other issues.
Through her Instagram she hopes to help patients and others to be able to stand up for themselves and say, “Hey, this isn’t right.”
“I’m trying to create a community on my social media by connecting patients together so that they can help each other because that’s kind of what patient community is,” Chan says.
A Doctor’s Perspective
Dr. Bruce Korf has served in the medical field for over 60 years. Before coming to UAB in 2003, Korf served at the Boston Children’s Hospital and Harvard-Partners Center for Genetics and Genomics. He now primarily works at the Undiagnosed Diseases Program (UDP).
The UDP is an outpatient program where patients are referred by their healthcare providers to find answers to their undiagnosed illnesses. In order to be referred, you must have a chronic illness (six months or more of duration), be medically unstable or extremely ill.
“We make a judgement that we think we have the resources that might be able to be helpful,” Korf says.
Doctors start by making sure the patient has had a standard evaluation at some point, then follow up by checking their medical history to see if they have the correct tools to further investigate their illness and hopefully provide answers.
If a patient’s diagnosis is found, the UDP specialists discuss the possible treatment plans with the patient and referring provider. If a patient is not diagnosed, they discuss what was done during the evaluation process and let them know possible things that could happen in the future. Additionally, they keep in touch with the patient in case any new ideas concerning their condition present themselves.
Unfortunately, not all patients can be seen at the UDP. In fact, there have been over 600 referrals to the UDP and only about 300 have been seen by the specialists. Out of the 300 patients, about 40% have received a diagnosis. Korf says the UDP is like the “Supreme Court.”
“Not every case should go to the Supreme Court, you can hope that most of them can get resolved much more locally,” Korf said.
As a physician who has worked with chronically ill patients, Korf understands there is still more to be done when it comes to patients finding the correct diagnosis.
“I do think people appreciate being listened to and having their concerns taken seriously.” Korf said. “One of the things we’ve come to realize is that no one individual can possibly be a storehouse of knowledge of every possible condition.”
While Samantha Balombiny was not seen at UAB, it did take years of wrong answers in order for her to find the right ones.
Finalizing a Diagnosis
At 28 years old, she fell ill once again. She was told she had anxiety, yet she was losing weight very quickly. She was told she had an eating disorder, but that was not the case either. She was finally correctly diagnosed at 31 years old with a rare compression syndrome: Ehlers-Danlos Syndrome (EDS). Additionally, she was diagnosed with Superior Mesenteric Artery Syndrome which is commonly seen with EDS. With the second diagnosis, she learned her aorta and superior mesenteric artery were compressing on her intestines not allowing food to go through, which explained the weight loss.
Even though Balombiny has a diagnosis now, she still would like to have been given answers years ago.
“I wish physicians would acknowledge that, yes, they have more medical knowledge than I do on a lot of things, but when it comes to me, I’m the expert,” Balombiny said.
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