Recently, I had the privilege of speaking with a Sikh family in the United States who generously shared their journey through illness, faith, and hope. Their story began in July 2023 with something that seemed small and ordinary. A shipment had arrived at their home, and the father and son were moving boxes. The wife joined them to help. While lifting, she felt a strain in her back. At first, they assumed it was just a pulled muscle. But instead of improving over time, the pain worsened. They visited their doctor and were prescribed pain medication. X-rays and MRIs were done. Weeks passed. Stronger medications, including narcotics, were tried. Nothing worked. The pain intensified to the point where she developed spasms and eventually could not even stand.
The family had planned to travel to India in October, but they canceled their tickets because her condition was not improving. Seeking further opinion, the husband reached out to someone he knew, a rheumatologist. After evaluating her case, he explained that the pain that persists and worsens for that long is not typical for a simple muscle injury. He ordered additional tests. Because the family had insurance, they were able to move quickly.
After the results, they immediately started getting calls from staff at neurology, nephrology, and oncology. A bone marrow biopsy had already been scheduled. Her creatinine level had risen above 4, and elevated calcium levels were affecting her bones and straining her kidneys. That weekend, they were sent to the emergency room. Doctors began to suspect Multiple Myeloma, but confirmation required a biopsy.
In mid-October, the diagnosis was confirmed. Treatment started immediately.
Looking back, the family shared that one of their greatest lessons was the importance of being proactive and informed. They emphasized that patients and families must educate themselves, ask questions, and understand all available options rather than relying solely on initial assumptions.
She was hospitalized for a week and remained mostly in bed. Thankfully, although her kidneys were affected, she did not require dialysis. For that, the family expresses deep gratitude to Waheguru Ji (God). A kidney biopsy was performed, and treatment continued for nearly a year. Today, her creatinine has improved to around 1.4. The kidney damage is irreversible, but stable, which is a blessing.
After six months of treatment, they were presented with further options: either continue locally or pursue an autologous stem cell transplant at Stanford University Medical Center. For this baptized Sikh family, the decision was not only medical but spiritual. They understood that transplantation often leads to hair loss. In Sikhism, maintaining uncut hair (Kes) is an article of faith and a core part of Sikh identity. Hair is not removed unless in a serious medical situation.
They turned to Prayers (Ardaas and Hukamnama), seeking spiritual guidance. After prayers and spiritual reflection, they felt ready. With faith and trust, they moved forward. In June–July 2024, they stayed at Stanford for two to three weeks. The transplant was successful, and they described the care they received as quality care. Afterward, they transitioned back to Kaiser Permanente for continued treatment.
At Kaiser, they were introduced to the idea of a clinical trial, combined with regular chemotherapy. They shared that they had never heard about clinical trials. Once again, they prayed with Sangat (Sikh congregation). After Ardaas and Hukamnama (Prayers), with strong faith, they signed the informed consent in 2024 and enrolled.
Now, she receives a monthly injection along with a 30-pill bottle of trial medication each month. The family explained that the medication would otherwise be extremely expensive, but through the clinical trial, they are receiving access at no cost. More than that, they appreciate the close monitoring, frequent lab tests, regular check-ins, and detailed oversight by the care team. The word “trial,” they reflected, can create fear. People assume it means being experimented on or treated like a guinea pig. They said that such misconceptions exist, and awareness is really needed so people understand how clinical trials work and the safeguards and close monitoring that are in place.
In December 2025, another biopsy showed everything looks stable so far. There is one more year of treatment ahead before she may be able to stop therapy completely. Her liver, kidneys, and overall health continue to be monitored carefully, giving the family reassurance.
Throughout their medical journey, they also got the opportunity to communicate with healthcare professionals about their Sikh beliefs and articles of faith, as well as the respectful handling of these articles of faith during imaging, such as MRIs, X-rays, or other medical procedures. They embraced it as an opportunity to share about the Sikh faith and foster cultural understanding.
When asked what message they would share with the community, their response was heartfelt. They emphasized the importance of keeping options open, staying informed, and advocating for oneself. They also spoke about faith in profound terms. Everyone must one day leave this world, they reflected, but to live and depart with Sikh values and with a peaceful inner conscience is true bliss. They encourage the Sikh community to trust in Ardaas and Hukamnama (Prayers).
Their journey reminds us that faith and medicine are not opposing forces. When knowledge, advocacy, community support, and spiritual grounding come together, they create strength. And in that strength, families find the courage not only to endure but to inspire.
~Ekta Grewal
Founder, Sikhs in Clinical Research
