Iris A O’Donnell Bellisario

Family and friends of Iris O’Donnell Bellisario are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with a catastrophic illness. Iris has chosen to fundraise with Help Hope Live in part because donations are tax deductible for contributors and will only be used to cover medical and related expenses.

When I was a kid, I used to tell people my legs were “having a leg attack.” The pain would come out of nowhere—sometimes so intense I couldn’t walk or would limp for days.

I was told it was growing pains. Flat feet. Anxiety. Stress.

For years, I believed that maybe it was all in my head.

In college, things got worse. I started having severe GI issues, and during my sophomore year, I collapsed in class and was taken to the ER—where I was again told it was anxiety. Like so many others, especially women, I learned what it feels like to not be believed in your own body.

I kept pushing through, trying to survive.

Everything started to make sense in 2023, when I was finally diagnosed with Ehlers-Danlos syndrome (EDS)—a connective tissue disorder that causes joint instability, frequent dislocations, chronic pain, and fatigue—and Mast Cell Activation Syndrome (MCAS), a condition that causes unpredictable and sometimes severe allergic-type reactions.

Looking back, those “leg attacks” were actually joint subluxations. What I thought was “breaking my toes” were full dislocations.

Since my diagnosis, my life has changed drastically.

I’ve had two knee surgeries and spent the last two years in constant physical therapy. I’ve dislocated joints doing everyday things—my knee in my sleep, my shoulder while lying completely still during an MRI, and nearly every finger in my hands.

Because of this, I’ve lost strength and function in my hands and wrist. Simple tasks like cooking or lifting light objects now require braces, adaptive tools, or help from others.

On top of that, MCAS has severely restricted my diet. I can safely eat only 30-40 foods, and have to freshly cook each of my meals, which is time consuming and restrictive.

Everything I eat has to be carefully managed to avoid reactions, and even then, symptoms can still happen unpredictably. Recently, I experienced my first anaphylactic reactions, leading to multiple ER visits in a single month.

Even though EDS and MCAS aren’t considered “degenerative,” they are still damaging. Repeated dislocations, chronic inflammation, and ongoing stress on my body have a cumulative impact—making daily life more difficult, painful, and unpredictable.

And the financial reality has become overwhelming.

Since last year alone, I’ve spent over $9,000 on medical care. My ongoing monthly costs—appointments, medications, therapy, and basic supplies—are close to $900 without emergencies.

Current medical bills (not covered by insurance) include:

• Over $4,000 from one hospital visit

• Nearly $2,000 in imaging

• Multiple additional bills totaling a few thousand more

And that doesn’t include the unexpected ER visits, ambulance rides, or new complications that continue to arise.

I’m sharing this now because I can’t keep doing this alone.

If you’re able to support me—whether through donating, sharing, or simply learning more about these conditions—it would mean more than I can put into words. Every bit helps me continue accessing the care, tools, and treatments I need to stay safe and maintain as much independence as possible.

Thank you for taking the time to read my story and for being part of my support system