Woman with a rare bone disease restricted to bed for want of ₹3 lakh
For the last couple of years, Savita, has been restricted to bed. She spends her days lying in a foetal position. The 35-yearold has a condition called ankylosing spondylitis, a type of arthritis or joint inflammation and pain that affects the spine, hips and the neck.
“The disease is progressive. Earlier, she was in pain, but could at least go to the washroom on her own. Now, she cannot move at all,” said her sister.
For Savita to be able to walk again on her own, two hip replacement surgeries and a spine correction surgery has to be done. The implants for the three surgeries required are not available at Lok Nayak hospital, where she has been undergoing treatment. Buying the implants would cost the family approximately ₹3 lakh.
“The surgery is free for the patients coming to the hospital. But, orthopaedic implants are expensive and not all of it are available in the hospital all the time, so the patients have to buy them,” said Ajay Gupta, professor of orthopaedics at Lok Nayak hospital, who is treating the woman. The family has also not been able to get help under the Delhi Arogya Kosh as they technically do not belong to the economically weaker section.
“The doctor said that we would have to spend around a couple of lakhs for the surgery for the implants,” said Savita’s sister, “But, my father does not work, and my mother and brother earn very little.”
For the last two years, Savita has not been able to get the surgeries, even though the doctor suggested it. To pass her time, she sews designs on cloth for a boutique with the limited function of her wrists. “The sewing brings in some money. But, she can only do it on days when she is not in pain,” said her sister, adding that she has to be on pain killers .
Around 0.1% to 1.4% of the population is affected by the disease, meaning it is common. “However, we see ankylosing spondylitis most commonly in men. It starts in the teens and the joints deteriorate when they are about 30. However, this case is uncommon because it is in a woman, she is just 33 years old and her joints have almost been completely damaged,” said Ajay Gupta, professor of orthopaedics at Lok Nayak hospital.
Savita needs to get a hip replacement surgery to be able to get at least some mobility.
“She is like a bundle of bones, she cannot even change positions. She has her entire life ahead of her and getting a hip replacement surgery will help . However, she will have a stoop once she has the surgery — osteotomy, in which we will cut parts of her spine and make it straight,” said Gupta.
“After the surgeries, she will no longer have the pain or be dependent on pills,” he said.