Thirty-year-old Rani Saranya from Kerala spent nearly eight years moving between clinics before doctors could explain why she was living with persistent pain, recurrent skin lesions, fatigue and digestive problems.
Today, she has been diagnosed with PASH syndrome, a rare autoinflammatory disorder characterised by pyoderma gangrenosum, acne (a rare, non-contagious autoinflammatory skin disease) and hidradenitis suppurativa (a chronic, non-contagious skin disease causing painful, boil-like lumps, abscesses, and tunnels) along with fibromyalgia and irritable bowel syndrome (IBS). “Getting a diagnosis was a relief because it helped me understand what was happening to my body and allowed me to access more appropriate treatment and support,” she says. The diagnoses brought clarity, but not an end to the challenges of living with multiple chronic conditions.
Years of symptoms
Ms. Saranya’s symptoms were initially treated as separate medical problems rather than manifestations of interconnected conditions. “For many years, I experienced symptoms without knowing that they were connected. I visited multiple doctors and received different opinions, but initially the conditions were treated as separate problems rather than parts of a larger picture,” she says.
The delay is not unusual. Hidradenitis suppurativa (HS), one component of PASH syndrome, is itself frequently underdiagnosed. Global prevalence estimates vary, but large systematic reviews place HS prevalence at around 0.3% to 0.4% of the population, while studies suggest it may affect as many as 2.5% of adults, indicating that many cases remain undetected.
IBS affects an estimated 5% to 10% of people worldwide, while fibromyalgia is estimated to affect around 2% to 4% of the population globally. Studies have shown significant overlap between the two conditions.
Pandurangan Basumani, senior consultant interventional gastroenterologist and director, Kauvery Hospital, Vadapalani, Chennai, says overlap among these disorders is increasingly recognised. “Roughly one-third of patients may have more than one of these conditions at a given time,” he says.
Patients with fibromyalgia frequently have IBS, temporomandibular disorders and chronic low back pain, while people with hidradenitis suppurativa may also experience fibromyalgia, migraine, chronic fatigue syndrome and bowel disorders, he notes.
The underlying mechanisms are multifactorial, involving immune-mediated inflammatory pathways, genetic susceptibility, environmental triggers and a phenomenon known as central sensitisation, where the nervous system becomes increasingly sensitive to pain signals.
The financial burden
Diagnosis apart, the cost of treatment remains a persistent challenge. Ms. Saranya is currently on the biologic drug adalimumab, with each injection costing around ₹6,000. Depending on the severity of disease activity, she requires one or two injections a week.
In addition to medication expenses, she faces recurring costs for specialist consultations, investigations, wound care and travel for appointments. “Living with multiple chronic conditions means healthcare is not just an occasional visit to a doctor, it is an ongoing process that requires constant monitoring, planning and adjustment,” she says.
At present, Ms. Saranya says, she does not receive insurance coverage or financial assistance from the government for her conditions. She believes recognition of rare autoinflammatory disorders such as PASH syndrome within government rare disease frameworks could help improve access to financial support.
Experts say such challenges are common among patients with overlapping chronic illnesses.
Need for coordinated care
According to Dr. Basumani, medicine is gradually moving away from viewing these disorders as isolated diseases. “The paradigm shift needed is to recognise that these conditions are interlinked and overlapping. Care should be patient-centred rather than process-centred,” he says.
Dr. Basumani says integrated clinics offer same-day multidisciplinary consultations, digital tools to coordinate appointments and treatment plans, and simultaneous management of inflammation, pain and psychological health.
Arul Prakash, clinical lead and senior consultant, medical gastroenterology and hepatology, SRM Prime Hospital, Chennai, says patients with chronic inflammatory disorders frequently require input from gastroenterologists, rheumatologists, infectious disease specialists, pain clinics, psychiatrists and physiotherapists. Multidisciplinary team meetings, where specialists discuss complex cases together, are becoming more common but remain limited to a few centres. “There is room for improvement so that more patients can benefit from coordinated care,” he says.
Ms. Saranya says awareness remains the most urgent need. “Chronic pain conditions are often invisible. Just because someone looks healthy on the outside does not mean they are not struggling physically and emotionally every day,” she adds.
Living with multiple conditions
Managing Saranya’s health now involves consultations with a dermatologist, rheumatologist, gastroenterologist, endocrinologist, physician and, when necessary, plastic surgeons. Regular blood tests, imaging studies, treatment reviews and specialist visits have become part of daily life.
Dr. Basumani says multidisciplinary care is essential because these conditions affect different organ systems while influencing one another. “Gastroenterologists manage IBS and inflammatory bowel disease, dermatologists treat hidradenitis suppurativa and pyoderma gangrenosum, rheumatologists address fibromyalgia and inflammatory arthritis, while psychiatrists, psychologists and pain specialists play important supporting roles,” he says.
However, he adds that care often remains fragmented. “There may be conflicting medical advice from different specialties. There is a risk of medication interactions, multiple appointments and escalating costs. The lack of coordinated integrated care is a major gap.”
“Unless there is good communication between consultants, there will be overlaps in treatment and gaps in care. Someone needs to coordinate the overall management,” says Dr. Prakash.
Specialists emphasise the role of a primary physician or family doctor in integrating care across departments. Earlier diagnosis, better access to treatment and stronger support systems will reduce the years of uncertainty many patients with overlapping chronic conditions continue to endure.