Growing up, Kristen Croft was always told by her teachers that she was a natural born caregiver, often paired up with the children in class who struggled emotionally and intellectually.
So, it’s no surprise that as an adult she became a special education teacher, specializing in educating children with emotional-behavior disabilities. It’s difficult and challenging work, but Croft simply says, “I love it!”
Croft also was told her entire life that she should control her weight; if only she would diet and exercise; if only she would count calories. In recent years, multiple doctors suggested she should have surgery to shrink her stomach and shorten her intestines. But it’s just not that simple.
She was put on her first diet at 7 months old, and struggled with eating disorders throughout her childhood, in high school, in college and throughout early adulthood, constantly caught in a cycle of restricting, binging, and purging.
“My ‘hunger’ signals never turn off. And my ‘full’ signals don’t exist,” said Croft, recounting her frustrations that led her at one point to weigh in at nearly 400 pounds. “You think you are starving, no matter what. It’s exhausting.”
She is not alone. According to the U.S. Center for Disease Control and Prevention, nearly 2 out of 5 Americans are obese, a condition linked to many chronic diseases, including heart disease, stroke, diabetes, high blood pressure, depression and certain types of cancer.
In early 2020, just before the pandemic, Croft’s online research landed on a website about new research at Vanderbilt University that indicated there may be genetic mutations leading to obesity. She was tested and discovered she has LEPR (leptin receptor deficiency), a rare genetic disorder that affects how the body processes energy, responds to food and stores fat. Most with this condition are obese before they reach their first birthday.
Clinical trial at HonorHealth Research Institute
As a result, Croft was invited to join a clinical trial at HonorHealth Research Institute supervised by Dr. James Swain, Research Director of the institute’s GI/Bariatric Research Division. While Dr. Swain’s specialty is bariatric surgery, Croft said she has never been pressured by him to go under the knife.
“In his care, I wasn’t getting the judgments for my body that I had gotten in other places,” she said. “He totally understood, and I really feel that he is looking out for my best interests. He listened to my story and things about me that had been dismissed my entire life.”
Instead, Dr. Swain has guided Croft on a 3-year journey though nearly daily self-administered injections of setmelanotide, also known as IMCIVREE, a unique drug made by Boston-based Rhythm Pharmaceuticals Inc. Her weight had dropped to about 310 pounds, and while she has gained some back, it is going back down. Croft now has realistic expectations of getting down to her goal of 250 pounds: “I know when people hear that they’re going to go, ‘That’s insane. That’s still so unhealthy and overweight.’ But for me, that’s what I would feel really good about.”
“Kristen is a great example of how we strive to closely listen to the needs of each patient,” Dr. Swain said. “Every patient is different, and each one deserves time devoted to patience and respect. The treatment for each patient is a collaboration, and close communication results in the best patient outcomes.”
Croft now is in her third Rhythm clinical trial. Setmelanotide binds to and activates receptors in areas of the brain involved in the regulation of appetite, while also increasing overall energy without increasing heart rate or blood pressure.
Energy benefit in addition to weight loss
This last effect is even more important than weight loss to Croft, who struggled for years with low energy, feeling unable to move, either sleeping or sitting still, doing nothing.
“For me, it’s all about the amount of energy I have,” she said. “Without medication, my body tries to stay at rest. With medication, I’m able to be up and moving around, because I’m not just completely wiped out.”
Since she began her clinical trial, setmelanotide has been approved by the FDA not only for LEPR, but also for two other weight-linked genetic mutations: pro-opiomelanocortin (POMC) deficiency, and proprotein subtilisin/kexin type 1 (PCSK1) deficiency. Setmelanotide is the first FDA-approved treatment for all three genetic conditions.
“Learning that I have this genetic disorder, it’s very clear to me that the specific condition that I have has nothing to do with the size of my stomach,” said Croft, a Beaverton, Ore., resident who turned 38 this summer.
“I have been judged. And I’ve had comments made about me, and had things assumed about me my entire life. Now, having the validation that this (genetic disorder) is why this is happening to me, I realize that I wasn’t just unable to control my eating. I wasn’t just being lazy,” she said. “I feel like fat-shaming is the last acceptable form of mockery and discrimination. Some people still feel it is ok to make fun of fat people. It’s wrong.”
Besides her “100 percent” recommendation of Dr. Swain and the clinical trials at HonorHealth Research Institute, Croft also recommends that those with chronic weight problems persevere and seek friendship with others on a similar journey.
“Keep searching. Don’t accept what the answers are. There are possibilities out there that you might not even be aware of. When I found out that the Rhythm studies had been going on before I even found out about it, I asked myself, ‘Why did no one along the way think to check me for these things? Why did no one else consider that? She’s struggled with weight her entire life,’” she observed. “Do what is best for you.”
