When Iqbal Sheikh Lived Nearly 5 Years In A Pond: Expert Explains The Hidden Struggles Of Rare Diseases

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The story of 16-year-old Iqbal Sheikh, who reportedly spent prolonged periods in a pond over nearly five years because being in water provided relief from a severe burning sensation, has drawn attention to the challenges faced by people living with rare or undiagnosed medical conditions. Iqbal was reportedly brought from West Bengal to Mumbai for specialised medical evaluation after his case gained wider attention. His exact diagnosis has not been publicly confirmed, with specialists reportedly continuing to investigate the underlying cause.

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While Iqbal's case is extraordinary, it also highlights a much wider healthcare challenge. For many people living with rare diseases, the struggle involves not just managing symptoms but also finding the right diagnosis, treatment and support. Dr. Vamshi V, Consultant - Internal Medicine, Gleneagles AWARE Hospital, LB Nagar, Hyderabad, explains the often unseen burden faced by these families.

Rare Diseases Affect More People Than We Realise

Dr. Vamshi explains that the term "rare disease" can make the problem seem much smaller than it actually is.

"When we say "rare disease," it sounds like it's just a few people. Technically yes each one affects less than 1 in 2,000 people. But put them all together and it's over 300 million people worldwide. That's more than the entire population of many countries. And for these families, the hardest part isn't just the illness. It's getting answers."

The Long And Difficult "Diagnostic Odyssey"

He points out that one of the biggest challenges for patients and families is the amount of time it can take to arrive at the correct diagnosis.

"On average, it takes 4 to 5 years to get a correct diagnosis. 4 to 5 years of wrong diagnoses. Multiple specialists. Tests that are painful, expensive, and sometimes invasive. Imagine being told "it's nothing" or "it's just stress" again and again, while your child keeps getting worse."

The Physical Toll Can Be Life-Changing

The doctor explains that rare diseases can affect multiple systems in the body, making their impact difficult to manage.

"Most rare diseases don't stay in one place. They affect many parts of the body. Chronic pain. Constant fatigue. Some cause nerve damage or developmental regression that can't be reversed. And because there are no standard treatment guidelines, families end up managing everything at home complex medicines, special diets, physiotherapy often without proper hospital or community support."

The Emotional Burden Of Not Knowing

He remarks that the uncertainty surrounding rare diseases can be among the most distressing aspects of the experience.

"The scariest part is the not knowing. Very few doctors have even heard of these conditions. Families feel isolated. They're often dismissed or told "we've never seen this before." Caregivers usually parents live with constant anxiety. Burnout. Depression. They're watching a prognosis that keeps changing, while trying to hold the family together."

The Financial Burden Never Stops

The doctor points out that the financial impact can add another layer of stress to an already difficult situation. This is where it hits hardest.

• Medicines: Less than 5% of rare diseases have approved treatments. The ones that do exist, called "orphan drugs", can cost lakhs per month.
• Lost income: One parent usually has to quit their job or cut down hours to become a full-time caregiver.
• Daily expenses: Travel to big city hospitals, therapies not covered by insurance, special equipment, home modifications.

It never stops.

What Needs To Change

He stresses that addressing the challenges faced by rare-disease families requires changes at several levels, from diagnosis and treatment to caregiver support and financial assistance.

"We need:

• Faster diagnosis.
• Better access to treatment.
• Support groups for caregivers who feel completely alone and
• Policies that actually ease the financial pressure on these families."

For Families, Rare Does Not Mean Small

Dr. Vamshi concludes by emphasising that the word "rare" does not capture the scale of what a family experiences when one of its members is affected.

"A rare disease may be rare to the world. But to that one family, it's their whole world. If you know someone on this journey, the least we can do is listen and not say "but you look fine.""

The story of Iqbal Sheikh has brought public attention to the uncertainty that can surround an unexplained medical condition. But behind every such case is a patient and family trying to understand what is happening, find appropriate care and continue with everyday life despite the uncertainty.

The doctor underlines that the word "rare" should never make these struggles invisible. Earlier diagnosis, better access to treatment, caregiver support and financial protection can make the journey less isolating for families who are already carrying an enormous burden.

Disclaimer: The information provided in this article is for general informational and educational purposes only and is not intended as a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or a qualified healthcare provider with any questions you may have regarding a medical condition.