Traveling Through Diagnoses: Bella’s Journey to PNH
For many young adults, traveling or studying abroad is a rite of passage—a chance to explore the world while stepping into independence. Bella had hoped to study abroad during college, but like so many others, the pandemic disrupted those plans and put her dream on hold.
Originally from Orange County, Bella spent her undergrad years at UC Berkeley. During that time, she experienced ongoing fatigue and frequent illness—issues that lingered but never received a clear explanation. Still, she was determined to move forward. At 22, she finally made the leap to London to pursue her master’s in Business Entrepreneurship at University College London (UCL), finally making her long-held dream of studying abroad a reality. But just two months into the program, her health took a dramatic turn, marking the start of a long and unpredictable journey.
Navigating Early Adulthood With an Unseen Illness
One morning, Bella woke up feeling paralyzed. Fortunately, she was close to her phone and able to contact emergency services. After being taken to the hospital and undergoing a variety of tests, doctors found all her numbers askew and her hemoglobin severely low. They were able to stabilize her enough to fly to California that November. At that point, Bella had a range of symptoms—rashes, inflammation, gauntness, jaundice, the flu, high fever, muscle and joint pain, and even the inability to walk some days.
She spent the next two months in and out of hospitals, putting her education on hold. During that time, she underwent hundreds of blood tests—sometimes multiple times a day. She had an Indium scan, a process where blood is drawn, spun down, and then re-injected to track immune activity. She saw as many specialists as possible, but most were ruling other conditions out, making her diagnosis feel just out of reach. Bella felt like she was living between hospital rooms, barely getting out of bed. She was weak, had no appetite, and couldn’t shake the feeling that there was no light at the end of the tunnel. Each day blurred into the next, with no clear answers
It was an incredibly draining time in her life. She recalls dissociating for months, in a somewhat constant state of denial. At the time, the trauma of it all didn’t fully register, but Bella could tell her family was deeply concerned. When doctors began suggesting her symptoms might point to cancer, it sent her into a spiral of fear and uncertainty. Her family was in complete shock—distraught at the possibility that she could be facing something so serious.
It was at this time she had to undergo a bone marrow biopsy, which she described as “the scariest moment of my life and something no one should have to go through.”
They also wanted to ensure she wasn’t being given medications that might mask her symptoms, which would make the race to diagnosis even harder to finish—but left her feeling the full weight of her symptoms without relief. As her numbers continued to decline, Bella began to feel even sicker.
The Long Road to Answers
After a few months, Bella was diagnosed with Still’s, an auto-inflammatory disorder. She was prescribed a low dose of Canakinumab, a biological agent. The improvement was noticeable, but without a clear baseline beforehand, it was hard to tell what “better” really meant. It was something—but not everything. Still, it allowed her to return to the UK and continue working toward her master’s degree, but she had to be cautious in her daily life—following an anti-inflammatory diet,limiting use of stairs, long walks or being overly active since she was extremely prone to fainting
In February 2023, Bella experienced a relapse. She required a blood transfusion, and concerning kidney markers raised fears that her kidneys were no longer filtering properly. As a result, she underwent another kidney biopsy. Around this time, a renal specialist began to question her Still’s disease diagnosis. Her LDH (lactate dehydrogenase, an enzyme that helps convert sugar into energy in cells) and ferritin (a blood protein that stores iron) levels were scarily high—something not typically seen in Still’s patients. Bella spent the following two months seeing a multitude of specialists, and experiencing regular fainting spells.
In June 2023, her condition rapidly deteriorated. Her eyes began turning yellow, and she was so fatigued she couldn’t even walk to the doctor’s office down the block. Following another fainting episode, she was admitted to the hospital, and after a two-week stay, working with a hematologist and undergoing 200+ blood tests, infusions, X-rays, CT scans, and MRIs, Bella finally had her answer: she was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), a rare blood disorder.
A Diagnosis, a Setback, and a Breakthrough
The moment was overwhelming—Bella finally had a diagnosis that made sense. She felt a wave of relief, mixed with fear about what would come next. Fortunately, the best doctor for the job was right there in London, and she was able to continue her care without leaving the country. She started on Ultomiris, which helped stabilize her for about six months. Still, her hemoglobin remained low, and she found herself stuck in a lifestyle that was far more sedentary than she wanted. In January 2024, she got the flu—and it triggered her PNH symptoms again. Her care team tacked on danicopan to her current treatment, which made a difference, but still didn’t bring her back to a place where she could function normally.
By September 2024, Bella’s health was in serious decline. She was experiencing severe fatigue, frequent vomiting, and eventually spent two weeks in her bed unable to physically walk. Around this time, iptacopan was being discussed as a new treatment option in the UK, and although promising, it felt like her last shot. She also learned she had both intravascular and extravascular PNH—an even rarer subtype—and one that doesn’t respond well to danicopan, which explains her limited relief thus far.
Starting iptacopan changed everything. It was the best thing that had happened to her throughout this journey. For the first time, she could feel her body stabilizing in a meaningful and lasting way.
Living Again—with Gratitude and Strength
Bella now holds a master’s degree and works in digital marketing. She’s built a really normal daily routine and capitalizes on her health by staying active every day—whether it’s strength training, yoga, or going on walks. Holistic health is of utmost importance to her. She meditates often, practices breathing exercises daily, uses the steam room, and makes it a point to get morning sunlight to support her circadian rhythm. She goes on at least three walks a day and really listens to her body, doing what she needs to feel her best—which right now means walking and working out as much as possible.
Waking up early and exercising regularly once felt unimaginable, but now it’s part of her everyday life. She’s loving her life in London, though she hopes to return to California someday to take over the family’s restaurant business with her sister. For now, London is home—and that’s where her incredible doctor, Dr. Austin Kulasekararaj, continues to care for her.
Over the course of this journey, Bella has developed a level of mental toughness she’s deeply grateful for. She appreciates her life more than ever. She tries to stay positive and reminds herself that she is not defined by her disease. Days when she is healthy feel like gifts after everything she has endured. She incorporates holistic health practices into her routine to help eliminate stress, which can be a trigger. She said:
“It’s sometimes difficult for people to understand, but there was a time I could not get out of bed. Now, to get up and to be able to make my bed every day makes me a more grateful person.”
Bella wanted to share a few organizations where people can donate to help support PNH research and advocacy:
