We are Chuck and Alexandra, Father and long-time friend of Rachel Ferullo.

After over a year of constant pain and misdiagnoses, our 34-year-old daughter and friend is fighting for her health and her future. This is her story—and how you can help.

We are of course biased, but looking at it objectively, we can say that Rachel is an exceptionally compassionate and kind person – always quick to come to another’s side. We’re sharing her story, because with the right care, she has a chance to reclaim her life.

Rachel was a classical Indian dancer, an outstanding one. There was nothing she enjoyed more. She was a Dancer - until she wasn’t.

She now has a rare illness that prevents her from dancing, or bending to pick up something she’s dropped, or bending her neck to look down at a book or up at the clouds, or even lying down to rest. It’s a very painful connective tissue disorder known as Ehlers-Danlos Syndrome (EDS).

How It All Began

In February 2024, Rachel developed foot pain when standing or walking; by June, her lower back hurt whenever she sat.

Severe pain forced her to stop working, dancing, and taking classes. She tried eastern medicine, western medicine, medications, physical therapy, injections, and more. Some treatments made things worse, others did nothing.

In late October 2024, her pain worsened and began spreading. It started to hurt to lie down, to carry her purse, etc. Her hips and shoulders began hurting, then her knees too.

In July 2025, she tweaked something going up a couple steps that triggered waves of excruciating pain. She was crying, calling out - we had to call 911. Soon after, severe head and neck pain set in, adding even more limitations.

She now lives in constant, inescapable pain, with no position bringing relief or rest. Picture contracting Covid and being told by the doctor to get lots of bed rest when lying and sitting are painful. Picture being told by multiple specialists, “This is above my pay grade.” The isolation from barely leaving her house combined with relentless pain and stress has left Rachel feeling trapped. The physical and emotional toll has been immense.

Rachel has become very good at masking her suffering; she looks fine—no limp, no crutches, always smiling—yet her severe pain remains invisible and often misunderstood.

A Diagnosis

After over a year of searching for answers, Rachel was diagnosed with a connective tissue disorder called Ehlers Danlos Syndrome (EDS).

Weak connective tissue affects ligaments, joints, muscles, and more. It can lead to inflammation, overworked tight muscles, weakness, instability, and most notably, a LOT of pain. Connective tissue is EVERYWHERE, so the effects on the body are widespread.

EDS often brings other complications. For Rachel, just a few include craniocervical instability, POTS, and mast cell dysfunction, which triggers immune and nervous system problems, intensifying her suffering.

Trying to discern what pain is caused by what on her own, to know what treatments are most important, has been very burdensome for Rachel. As EDS affects different people in different ways and intensities, the path of treatment isn’t always clear, requiring a lot of trial and error that is costly but necessary.

In the process of seeking answers, in the past year, she’s:

• Seen over 50 different medical professionals

• Attended over 275 appointments

Only 5 providers have had any training in EDS—a rare specialty that’s often hard to access and expensive. Misinformation or ineffective care have cost Rachel financially, emotionally, medically, and in terms of lost time.

With such a complex condition, the need for continuous specialty care is paramount. The effects of foods, medicines, and treatment are different from the mainstream. Specialty care is critical for navigating this path, but is rarely covered by insurance.

Expenses

Medical debts have piled up:

She still needs:

On top of this, regular expenses—gas, groceries, car repairs—continue to mount.

With Your Help

Rachel longs to go out to eat, curl up and watch a movie, return to dance, and overall just live free from constant, severe pain.

It’s been heartbreaking to watch our daughter and friend lose so much of her life to pain and endless obstacles. But this doesn’t have to be the end of her story. It will take time, but with the right care and support, we believe she can truly live—not just survive.

Even a small donation helps her afford care. Your donation, your share, your kindness—it truly makes a difference. If you can’t give, sharing this with others is still powerful. Every share or donation represents someone who has chosen to stand up with Rachel against this beast of a disease.

From the bottom of our hearts, thank you for standing with her.

With love and gratitude,

Chuck Ferullo & Alexandra James