Chennai: 28th Feb 2022, Rainbow Children’s Hospital, one of the leading pediatric hospitals in India today announced its support for Rare Disease Day 2022 with the theme for this year “Share your Colors” along with the children who were treated for rare diseases with their parents who came forward together with the hospital to raise awareness for people living with such diseases. Chief Guest Dr. J. Radhakrishnan, IAS, Principal Secretary, Department of Health & Family Welfare, Government of Tamil Nadu along with other special guests witnessed the occasion.
Every year, the last day of February is recognized as a rare disease day to provide health care, diagnostic & treatment facilities to people diagnosed with rare diseases & to offer support to their families. There are about 7000 rare diseases with 300 million people affected around the world and of which 72% are genetic. More than 2/3 of people affected by rare diseases are children and for the parent, rare disease means living with uncertainty.
Dr. R. Ganesh, Senior Consultant – General Pediatrics & Pediatrics Metabolic Disorders, Rainbow Children’s Hospital said, “There are a lot of challenges faced by the medical fraternity in managing rare diseases like lack of awareness about rare diseases in the general public & in the medical fraternity which may result in delayed treatment/misdiagnoses. The diagnosis process for a rare disease may result in multiple outpatient consult visits or admissions to the hospital, frequent blood sampling, and subject to X rays and scans, thereby taking a long time to establish the diagnosis & Once a diagnosis is finally established, then comes worries in the mind of patients and their families – is there any specific treatment to cure the disease or there is no treatment available. Also for the children and their families, learning to cope without knowing anything about their future creates agony and angriness.”
Dr. Rahul Yadav, Lead Consultant – Perinatology & Neonatology, Rainbow Children’s Hospital added, “Diagnosis, treatment, and long-term care of patients with rare diseases require multidisciplinary cooperation between medical and paramedical personnel and with patients and families. We do perform basic new-born screening tests for all the babies born in our hospital [Extended new-born screening tests in select situations] that helps in early post-natal diagnosis and treatment of certain rare diseases like inborn errors of metabolism and inborn errors of immunity.”
Mr. Saravanakumar Rajan, General Manager Operations, Rainbow Children’s Hospital said, “As you are all aware that Chennai is emerging as a major hub in medical tourism & soon will become a global healing destination. Rainbow Children’s hospital in Chennai
equipped with 135 bedded quaternary care offering comprehensive health care, diagnostic & supportive treatment care facilities for children diagnosed with certain rare diseases. The hospital has a multidisciplinary team of metabolic specialists, neonatologists, Pediatric intensive care specialists, pediatric neurologists, pediatric nephrologists, biochemists, geneticists, hemato-oncologists along with nursing and paramedical staff.”
Medical crowd funding recently has emerged as an alternate method of raising funds for these diseases. Families can opt for crowd funding in a digital platforms like Milap, Ketto and impact guru. NGOs like rotary clubs can liaison with the hospitals treating rare disease patients to reach out the families with rare diseases offering them support for medical help where ever needed. The hospital houses should have sophisticated machines like Prismaflex that helps to remove the excess ammonia, lactate and correct the acidosis quicker in a sick child with inborn errors of metabolism thereby improving the survival outcome. Since prevention is better than cure.
Alone we are rare, together we are strong goes the saying. We, the medical and paramedical personal and the families with rare diseases today feel proud to join the many others in the world who are working towards diagnosing and treating people affected with rare diseases and offering support to their family.