Diagnosed and defiant

At 18 years old, most teenagers are thinking about university, friendships, and the exciting journey into adulthood. For Shivali Rambachan, however, life took a drastic and unprecedented detour.

A pre-med university student from Trinidad studying in the United States, Rambachan is at present living with a rare and aggressive autoimmune disease known as ANCA Vasculitis, specifically, Granulomatosis with Polyangiitis (GPA), formerly known as Wegener’s granulomatosis.

This condition causes the body’s immune system to mistakenly attack blood vessels, leading to inflammation and damage in organs, primarily the lungs, upper respiratory tract, and kidneys.

For Rambachan, however, the disease affects nearly every major system in her body, including her lungs, kidneys, upper respiratory tract, skin, nervous system, GI tract, and more.

Rambachan’s journey with this illness began at age 17 when her health started declining without a clear explanation. “I had to be hospitalised often,” she recalls. “There were many bad test results, but no answers.”

In February 2024, her symptoms took a drastic turn when she began experiencing a pulmonary haemorrhage, coughing up large amounts of blood and struggling to breathe. “That was when I knew this wasn’t just a flu or infection. This had to be something far more serious.”

Her symptoms of GPA were relentless and disturbing—coughing, vomiting and urinating blood, nosebleeds, eye bleeds, rashes, fevers, and intense muscle and joint pain, to name just a few.

Despite frequent hospitalisations and worsening symptoms, it took months for Rambachan to receive a proper diagnosis, and she remembers it being “incredibly hard”. Along with her mother, Suzanne, and the help of her family, she made the difficult decision to leave Trinidad and seek specialised care in the US, hoping to get a diagnosis.

Finally, on June 25, 2024, the diagnosis came: ANCA Vasculitis. “Half of me was relieved after months of not being believed and not getting help; it was great to get validated and officially know the name of the disease that was trying to kill me,” she recalls.

She had an answer. But the other half of her was devastated, as at 17 years old, she felt as though she had just started living, and her life had been turned upside down by a deadly and powerful disease.

Vasculitis is rare, especially in young people, and Rambachan’s multi-organ involvement makes her case even more unusual. Living with a rare disease also comes with emotional isolation. “I don’t know anyone else in Trinidad with Vasculitis,” she says.

But through the Vasculitis Foundation and the “Inspire” app, she has found an online community called “Vasculitis Voices” where she is able to communicate with other Vasculitis patients. These connections offered both comfort and harsh realities.

“It’s inspiring and empowering to communicate with Vasculitis patients, but it’s also troubling to know how badly they are suffering and how many experiences we all share. Especially in the realm of healthcare, many of us have faced a lot of discrimination and scrutiny, have had doctors not believing us, not giving us proper treatment, making us feel like we aren’t “sick enough”.

There is currently no cure for Vasculitis. Treatment focuses on managing symptoms and suppressing the immune system to prevent it from attacking the body. For Rambachan, this has meant enduring powerful steroids, chemotherapy, immunosuppressants, biologics, and plasma exchanges. These treatments bring their own risks, as severe immunosuppression leaves her vulnerable to infections, and the side effects of the treatments can be dangerous and gruelling, especially in a young female. Still, she takes every precaution she can, including wearing a mask and avoiding crowds.

Despite the physical toll, Rambachan remains mentally and emotionally resilient. Her faith plays a central role in her strength. “I pray every single day,” she says, “I believe that God gave me this disease because He knows I’m strong enough to handle it.” Inspired by her own experience, she is now pursuing her dreams of becoming a rheumatologist to help patients like herself. “I have a unique perspective, and I want to use it to support others who feel unheard or dismissed.”

Some of her darkest moments included battling sepsis seven times and being resuscitated three times. Alongside heart complications, hypertension, and anaemia, Rambachan often feels fatigued and is constantly in pain. But none of this stops her from embracing life’s joys. “My disease will never control me, and it will never win,” she says confidently and tries to create as much normalcy in her life as possible. She finds strength in the small things, such as doing her daily make-up routine, getting her nails done, cooking, baking, creating digital art and playing with her dog Scarlett. “My dog is my happy place,” she says. “She keeps me going strong.”

Despite the constant challenges, Rambachan is thriving academically and emotionally. Her university has been supportive, and she continues to pursue her education with determination.

She urges others battling chronic illness to keep pushing forward. “These diseases can be very isolating, but you are not alone. What you feel is real. Be a warrior for yourself and defeat your disease.”

Shivali Rambachan is more than just a patient—she is a fighter, an aspiring healer, and a voice for those who often go unheard. Her story is one of resilience, courage, and a fierce determination to not just survive but to live boldly.

“I am a Vasculitis warrior,” she says with quiet strength, and her words echo a powerful truth: that even in the face of a relentless disease, hope and purpose can still thrive.

Her family wants others to understand the reality of living with a rare disease, not just for the patient but for their loved ones, too.

While this journey has been overwhelming, they want to share that with the right support you can find the strength to face each day. They hope that by sharing Rambachan’s experience, more awareness will be brought to the struggles families face when dealing with rare illnesses, and how vital compassion, community, and understanding are in making it through.