Three sisters, born to the same parents, developed a rare genetic disorder that amounted to just 70 cases in history. Their story has attracted local news and worldwide attention in equal measure. A revolutionary new surgery has solved the problem but the memories and the story before it, will remain in their lives forever.
The growth of itchy calluses in the family of 'untouchables'
Twelve years ago in the village of Bhadrak, located in eastern India, Padma Devi and Abhimanyu Sethi were overjoyed with the birth of a beautiful baby girl, Gitarani. However, around her first birthday, she began developing sores on her feet. They increased in size and thickness and eventually prevented Gitarani from wearing shoes or walking. Gitarani then had to be carried everywhere.
Local doctors had no helpful suggestions and the sores turned into hard growths. Soon, she developed similar growths on her hands as well. Four years later, Abhimanyu and Padma welcomed twin daughters, Jamuna and Ganga. Unfortunately, the same itchy growths began to appear on their hands and feet as they approached their first birthday.
By that time, the family's neighbours had labelled all of them as ‘polluted’ and therefore, untouchable. Other children avoided Gitarani and her sisters, afraid of developing the same symptoms upon contact. Neighbours also refused to lend the family any cooking utensils, an otherwise common practice in the village. When people did visit, the children were locked in a separate room.
The situation continued on for seven years. In that entire time, the parents had to physically carry their children everywhere. Over fifty doctors were visited, yet none would help the children and a few suggested expensive treatments, which were beyond the means of the family who lived on USD 3 per day.
Finally, last month, they visited Cuttack City. There they met Dr. Bubhuti Bhushan Nayak, a physician at Shrirama Chandra Bhanj Medical College. He examined the girls and diagnosed them with Olmsted Syndrome (OS).
Olmsted Syndrome: a rare genetic disorder
Olmstead syndrome is incredibly rare and Dr. Nayak could not believe that unrelated parents could produce three children with the same disorder. Both parents and other relatives showed no signs of being affected.
The genetic disorder is autosomal recessive and dominant X-linked. That meant males tend to inherit the disorder more than females. It also begins during infancy.
Classic signs of the condition include blindness, nail abnormalities, development of thickened keratotic plaques on feet and hands and deformity of the digits. It is one of the many disorders in the heterogenous group of palmoplantar keratoderma. Treatment with retinoids have been prescribed, to regulate epithelial cell growth.
Eyes on the three girls with Olmsted Syndrome
By the time Dr. Nayak operated, the growths on Gitarani’s feet were over 10 inches thick. He successfully removed all the growths from each child.
They are recovering well and have been able to stand and walk for the first time. Reduced muscle and bone strength was experienced as they had to learn how to walk.
While additional recovery occurs, Dr. Nayak and other physicians around the world are watching closely. With only 73 cases in history, doctors are still learning about effective ways to treat the disorder and whether the growths will reappear. MIMS