Scleroderma Is No Cake Walk
Diseases
Rare Disease
Issues and Challenges
Monika has encountered: Access to Medicine, Copay Issues, Insurance Issues, Medicare / Medicaid Issues, Rare / Underserved Disease, Disability
My Story
Fairburn, Ga
January 6, 2026
Subject: A Personal Appeal for Increased Awareness and Support for Scleroderma Patients
Dear Donzella James,
My name is Monika Hilton, and I am an advocate residing in Fairburn Ga. I write to you today not only as a citizen, but as a former small business owner and a patient whose life was fundamentally altered by a rare and often misunderstood disease: Systemic Sclerosis, commonly known as Scleroderma.
Prior to 2016, I was better known as “The Cake Lady,” having built a celebrated culinary career that culminated in competing on national television. My hands were my livelihood. That changed abruptly when, I lost the dexterity to perform basic tasks. I could no longer hold a pan or decorate a cake, forcing me to relinquish the career I loved. After a difficult diagnostic journey, I was told I had Scleroderma, an autoimmune disease that causes hardening of the skin and connective tissues and can attack internal organs. This diagnosis began a profound personal and professional reckoning, a struggle compounded by the devastating loss of my mother in 2020.
In facing this disease, I developed a personal framework to survive and, ultimately, to advocate. I call it RISE: Resilience, Integration, Support, and Empowerment. It represents the daily choice to adapt, to accept necessary help, and to find new purpose. For me, empowerment has meant becoming a voice for others like me, sharing my story to spread awareness. However, individual resilience must be met with systemic support. The scleroderma community faces significant challenges, including delayed diagnosis due to lack of physician awareness, limited treatment options, and the immense financial and emotional burden of managing a progressive, incurable illness.
I urge you to support policies and funding that will RISE to meet the needs of patients with rare diseases like scleroderma. This includes:
· Supporting increased funding for NIH research into better treatments and a cure.
· Co-sponsoring or advocating for legislation that improves access to specialized care and timely diagnosis.
· Ensuring that state and federal patient support structures recognize the unique burdens of chronic, debilitating illnesses.
My story is one of thousands. We are entrepreneurs, parents, workers, and dreamers whose lives have been redirected by disease. We choose to rise every day. I am asking you to rise with us by using your influential platform to bring visibility and tangible support to the scleroderma community.
Thank you for your time and consideration. I am available to discuss this further at your convenience and would welcome the opportunity to share more about The Mo Experience.
Respectfully,
Monika Hilton
The Mo Experience Foundation
Www.TheMoExperience.org
My Motivation and Inspiration
My motivation is to spread awareness about Scleroderma
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