Hello, my name is Jessica. I’m a 45-year-old single mother of two, a son and a daughter. A lot of you know me from TikTok, which brings a lot of joy through the community I’ve built through content creation.

I was diagnosed with severe multiple sclerosis in 2012 while I was pregnant with my first child and attending my last year of nursing school. I managed to graduate and become a registered nurse, which was my dream since I was a little girl. Unfortunately, I became too disabled to work a few years later after the birth of my daughter. I spent the next several years trying to get better through physical therapy, chemotherapy, and various new treatments, but I was always worse than typical MS patients (50+ brain lesions, 3 spinal cord lesions, and optic neuritis). Nothing stopped the lesions, and by 2018 it was clear that something else was going on with my body, but none of my physicians could figure out exactly what was causing me to go downhill so fast.

Finally, in 2019, after losing a lot of weight and experiencing alarming night sweats, it was discovered that I had four enlarged lymph node tumors which were removed from my neck. My physicians were certain it was stage 3 lymphoma, but when the pathology results came back, it indicated that I actually had a much worse diagnosis/prognosis called HIV-Idiopathic Multicentric Castleman Disease (iMCD), which is an incredibly rare orphan disease that roughly affects only about 500 people in the USA yearly. iMCD is an incurable and incredibly rare life-threatening disorder characterized by systemic inflammation, enlarged lymph node tumors, and dysfunction of multiple organs due to an unknown cause. iMCD involves a dysregulated overproduction of a signaling protein that plays a role in inflammation. This can lead to a cytokine storm, a life-threatening condition where the body releases excessive amounts of cytokines. Currently, there is no cure for iMCD, and treatment focuses on managing symptoms and complications. iMCD has a poor prognosis, with a significant percentage of patients dying within 5 to 10 years of diagnosis. My form of iMCD has a mortality rate of roughly 40%, more than double the mortality rate of all forms of lymphoma, breast cancer, and prostate cancer. iMCD is so rare that it’s currently scientifically unclassified, meaning it is unknown if it is a true cancer or not. Unlike lymphoma, breast cancer, and most other forms of common, treatable cancers, there is only ONE FDA-approved treatment for iMCD, which I’ve been on since 2019.

I am treated by the hematology-oncology department with the Bone Marrow Transplant Clinic at the Brown Cancer Center at the University of Louisville hospital, an academic research center. For six years, I have been their only iMCD patient. At the time I was diagnosed, even the best oncologists in the country had never actually seen an iMCD patient in practice. I feel incredibly blessed that my UL physicians have stepped up and learned everything possible about this orphan disease. I also speak about having iMCD on orphan disease drug panels at conferences and spend a great deal of time educating other patients and medical professionals about my disease. Although I’ve been legally disabled for quite some time, being involved in my own care has brought me the same joy I experienced while working as a registered nurse. Unfortunately, I’ve also experienced the heartache of losing friends to this horrible disease. A lot of them also have young children like me, which is always on my mind.

I was stable and tumor-free until April of this year when a new hypermetabolic enlarged lymph node was discovered deep in my pelvis on my yearly PET scan. The stress and uncertainty of dealing with iMCD led to the breakdown of my 14-year marriage a few years ago, so now I face this alone, which is scary. **My medical bills have been astronomical since 2012, and now that I’m facing another surgery, scans, and possibly other expensive treatments, I’m reaching out for help.** Although my ex-husband is incredibly supportive, the financial strain has caused a great deal of stress in my life, which further exacerbates my health struggles in a negative way.

A few days ago, I became dizzy at my mother’s home where I’m now living due to having no other housing option. My blood pressure showed I was in a hypertensive crisis and extremely tachycardic, so she called an ambulance. I was taken to the hospital where I was admitted to the cardiac inpatient floor for several nights. I’m now also dealing with a diagnosis of POTS (Postural Orthostatic Tachycardia Syndrome) on top of everything else. While I’m so glad to have answers, I am now utterly broken, depressed, and overwhelmed. **All I want is to live long enough to see my sweet children grow into adults and beyond, but honestly, the statistics are not on my side.** I’d also love to be able to find some peace and secure my own housing again, but I desperately need help with my medical bills in order to make that happen for my little family.

Thank you so much for taking the time to learn about iMCD. It means the world to me to know that people care and want to help.