Maci: How Early PMOS Care Launched Her Journey to Advocacy

When Maci first got her period at 12 years old and didn’t get it again for another year, she didn’t realize something was wrong.

“There is a stigma around talking about periods,” Maci says. “As soon as you’re 12 or 13, there’s pressure that you don’t talk about it. I didn’t recognize something was wrong.”

After a few years of battling with difficult acne, Maci’s pediatrician referred her to Children’s Hospital Colorado for additional testing, and she was diagnosed with the hormonal and metabolic disorder polyendocrine metabolic ovarian syndrome (PMOS) when she was 15 years old.

“I was very lucky to get diagnosed very young. Most people find out through a very traumatic experience they have this condition,” Maci says. “It wasn’t until my diagnosis that I started to realize going over a year without a period wasn’t normal.”

Comprehensive PMOS care

After her diagnosis, Maci started seeing specialists at Children’s Colorado's PMOS Clinic, which brings together a dedicated team of experts. The clinic includes endocrinologists, reproductive specialists, dietitians, psychologists and dermatologists to address the many systems all impacted by the condition. This unique model helps teens better understand all pieces of PMOS, rather than just a single focus on the reproductive system impacts.

“Being able to have this judgement-free, inclusive environment in the healthcare system where you can speak your mind was really cool,” Maci says. “It was also amazing to be in a healthcare setting that actually listens to their patients. They didn’t dismiss my symptoms or just tell me to lose weight as a catch-all solution as women and girls are often told.”

As Maci navigated through her teen years and prepared to leave for college, her care plan grew with her. She started to feel more knowledgeable about her body, her condition and women’s health. By the time she started college, she was able to guide her appointments based on her concerns and make her own treatment decisions.

“You have to take it one step at a time,” Maci says about her journey. “There’s a way for you to reclaim what you think has consumed your identity.”

Paying it forward

When Maci first connected with pediatric endocrinologist Melanie Cree, MD, PhD, at Children’s Colorado, she learned about opportunities to participate in the groundbreaking research on adolescent PMOS. She was drawn to the chance to contribute to a field she found interesting and important — and to help make the path clearer for patients who would come after her.

“If I can help, I want to help,” Maci says about considering the opportunity. “We’re all in this together, and I’m happy to be able to pave that way for other women and girls to participate in research.”

Maci participated in two PMOS studies with Dr. Cree. One examined fatty liver content and how adolescent patients responded to treatment. The other explored appetite, insulin, blood sugar and hunger cues. The research included daily study drinks, periodic liver ultrasounds and full-day visits with fasting, IVs and blood draws. Her participation also contributed to Dr. Cree’s project called CALICO, the first PMOS database of its kind in the United States.

“We are directly translating our research findings into our patient care,” Dr. Cree explains. “It’s actually completely changed how we counsel our patients.”

By her senior year of high school, Maci had grown more confident in understanding her body, recognizing which medications worked for her and bringing her own questions to appointments. Now  she’s managing her PMOS alongside Dr. Cree through telehealth visits every six months and blood work as needed when she is home.

 Maci wants to be an advocate for girls navigating the healthcare system after her — showing that people are more than just their diagnosis. The condition was renamed from polycystic ovary syndrome (PCOS) earlier this year, thanks in part to the efforts of Dr. Cree and an international team of doctors, and now better encompasses the condition's full-body impact. Maci saw this change as a meaningful step forward.

“It’s about time,” Maci says. “The name is now more comprehensive and more inclusive. It feels closer to what I experienced.” And by sharing her experience, Maci hopes to help more girls recognize their symptoms, speak up and find the support they need sooner.