Iʼm Nicoletta. a patient Advocate, Mom to a CDH Warrior, Health researcher

As a patient advocate, my mission is to guide you through the complexities of the healthcare system, providing support, resources, and advocacy every step of the way. From navigating diagnoses to maximizing insurance coverage, I am committed to ensuring you can focus on healing and staying healthy during lifeʼs most challenging times.

Additionally, working in the billing and collections department of the international organization taught me how to successfully fight inflated hospital bills, spot billing errors, appeal denials and write medical necessity letters to maximize patients’ insurance coverage. 

For many years, I’ve lived and breathed the US healthcare system by actively advocating for my own family and friends who faced complex medical issues and emergencies. I’ve realized how important is to have an advocate by your side who can lead you to the right people in situations when you are the most vulnerable. 

The U.S. healthcare system is not only enormously complex but also the most expensive industry that requires insiderʼs knowledge on how to minimize patientʼs financial responsibility. 

I understand firsthand how much physical and mental damage a misdiagnosis can bring and how life changing a proper diagnosis is. Dealing with multiple chronic conditions myself, I’ve learned how important is to do the research and seek Centers of Excellence specialized in diagnosing and treating complex medical conditions. The power of research saved my daughter’s life a couple of years after receiving my own diagnosis which is why I'm fiercely passionate about helping my clients in this area. 

i don't want you to have to go through that alone.

I have experienced firsthand how draining and challenging navigating the intricacies of the health care system can be while fighting for my own diagnosis and actively supporting my daughter experiencing a healthcare crisis.

Aspen was born with a deadly condition that only has a 65% survival rate nationwide (95% survival rate at JHACH where she was born), she had a life saving surgery at 4 days old and came out of the NICU 14 days after with only a minimal oxygen support and virtually no issues whatsoever. The team that took care of my daughter not only saved her life: they gave her life quality that every healthy child has.

When deciding on my unborn daughter’s care my family faced very difficult decisions on which medical team we should entrust her life to. The amount of research, conversations and learning we did led us to JHACH in St. Pete, FL more than 1,000 miles away from home and two pediatric surgeons who ultimately saved Aspen’s life.

She is now a happy and healthy 3 year old who just started her second year of school and will always be the best testimony of my own work as a patient advocate and medical mother. 

My daughter Aspen was born in St. Petersburg Florida, at John Hopkins All Childrenʼs Hospital where my family relocated temporarily from Warren, NJ.

*fast forward to her birth.*

I was relentless in finding not only help but primarily success stories. 

My OB never had a patient who was pregnant with a CDH baby and had no knowledge of survival rates or best medical facilities that could save my daughter’s life. Surprisingly, no one in the NYC/NJ area was even attempting to treat CDH babies.

The terrifying feeling of hopelessness and the unknown gave me the strength to go from having no knowledge of the condition to finding the best CDH surgeon in the world in less than 48 hours from the diagnosis.

At 19 weeks gestation my unborn daughter was diagnosed with a Congenital Diaphragmatic Hernia (CDH).

BUT just when i thought my health was pretty steady, life threw me another curveball.

Over a decade ago, my journey into Patient Advocacy began unknowingly. After facing complex health issues and receiving inadequate care from over a dozen doctors, I embarked on extensive medical research, which felt like my last chance to reclaim my health and life. Frustrated by the lack of proper diagnosis, costly diagnostic tests, unnecessary surgeries, and "band-aid" treatments that never addressed the root cause of my chronic health issues, I sought second, third, and even fourth opinions from world-class experts. As a firm believer in science and data, I was convinced that no question, especially one related to health, should remain unanswered.

I didnʼt choose Patient Advocacy. Patient Advocacy chose me.

This perseverance led me to a specialist who finally diagnosed me with the rare condition of Mast Cell Activation Syndrome (MCAS) and provided targeted treatment that significantly improved my quality of life.

Itʼs hard to think about what my life could have looked like had I not had the courage, time, or know-how to advocate for myself.

Receiving the correct diagnosis was incredibly empowering. It validated all my tireless efforts, provided me with a toolkit to manage my condition, and connected me with the MCAS community, where I found much-needed resources.

MCAS is not the only chronic condition I face; I also have endometriosis. Similar to MCAS, endometriosis has a spectrum of severity, ranging from manageable to debilitating pain. Both endometriosis and MCAS are considered invisible illnesses, where sufferers' normal physical appearances often hide lifelong suffering if not treated properly.

Unlike my MCAS journey, I didn’t have to fight for my endometriosis diagnosis. However, it took extensive research to find providers who were true experts and who thoroughly explored every option to help me feel like myself again.

The emotional burden of not having proper care had been lifted off my shoulders.  

Similar to other chronic conditions, there was no magic bullet or one-size-fits-all solution for me. It has been a journey that required lots of patience and commitment. however, having a great care team on my side was nothing short of life-changing.

What’s even more important, I’ve also learned how to manage MCAS symptoms on a daily basis and was able to return to was work feeling fully productive and engaged.