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Bitter side of sugar

A storm broke out when Swati announced she was going to marry Udit. The family’s objections had nothing to do with caste or community. What troubled them was Udit’s state of health; the Delhi-based software businessman suffered from Type 1 diabetes mellitus or juvenile diabetes, as it’s commonly known.

So Swati turned to Dr Ashok Jhingan, an endocrinologist who heads the Delhi Diabetes Research Centre (DDRC), for help. “She brought her relatives to my chamber and I had to fight with them to get their consent because they had so many misconceptions about Udit’s condition,” recalls Dr Jhingan. “Now they are happily married with two lovely children.”

Love and marriage were also proving to be a bitter pill for Vineet Bathla, a 30-something Faridabad businessman. His parents found it difficult to get a suitable bride for him because he had Type 1 diabetes. Most parents rejected Vineet as a prospective groom because they feared it foretold a lifetime of misery.

The Bathlas too sought the DDRC’s help. Finally, Vineet found a bride also a Type 1 patient from Punjab through the centre’s matchmaking efforts.

Juvenile diabetes is a potentially life-threatening form of diabetes that usually develops during teenage years when the body’s immune system turns against its own insulin-producing cells. The more common and less severe form of diabetes, Type 2, develops with age, and is often the outcome of unhealthy diets and a sedentary lifestyle.

Udit and Vineet are not alone. Dr Jhingan says he came across many diabetes patients who faced opposition to marriage since he set up the DDRC in 1985. “A large number of Type 1 diabetic patients face psychosocial problems and the biggest concern is the matrimonial issue. They are often stigmatised,” he says.

Health experts rue that not much is being done at the government level or otherwise to help diabetics overcome social barriers.

To fix matches and reconcile families and couples, the DDRC launched a website, diabeticmatrimony.com, a couple of years ago. It’s the country’s only website dedicated to matchmaking for diabetics. At present, more than 750 people from all over the world are registered with the website, which gets about 50-60 hits per day.

This is but the tip of the iceberg in a country where about 40 million people suffer from diabetes a figure that is likely to touch 80 million by 2025, says the Delhi-based Diabetes Foundation of India. Nearly 5 per cent of India’s diabetic population is believed to be suffering from Type 1 diabetes. Among them is the actor Kamal Haasan, says the matrimony website.

“It’s a fact that diabetics in India find it difficult to get life partners,” says Dr Anoop Mishra, chairman, National Diabetes, Obesity and Cholesterol Foundation (N-DOC). “If people divulge information before marriage that they are diabetic, there is a general reluctance to choose them as partners.”

Doctors say there are three main reasons for this. “People who are likely to get married to Type 1 patients feel their partners may develop serious complications like kidney failure and have a short lifespan and that they may not be able to have a normal sexual relationship with their partners. They also fear that they may not be able to have children because of their partners’ condition,” says Dr Vijay Viswanathan, managing director of the Chennai-based MV Hospital for Diabetes.

A recent study by the hospital shows the degree of fear and diffidence both sexes feel when it comes to wedlock and diabetes. According to the study, which was published in the journal of the Tamil Nadu Association of Physicians of India, about 82 per cent of the people surveyed said they were worried about getting married. About 85 per cent of the men and 86 per cent of the women wanted to hide their condition from their partners. Compared to 56 per cent men, 86 per cent of women felt they would not be able to fulfil their partners’ expectations. About 90 per cent men felt they wouldn’t have a normal sex life because of their condition.

If these are worries that came before marriage, there are a host of post-marriage complications as well. A recent DDRC survey says nearly 50 per cent women it covered in its research (those diagnosed with Type 1) were sent back to their parents’ homes within a year of marriage. Further, about half of them stopped taking care of themselves because their husbands were not willing to shoulder their treatment costs.

Take the case of Swapna (name changed). The 26-year-old from Calcutta, who comes from a middle-class Bengali family, started facing trouble within a year of marriage. Even though her parents had explained to the groom’s family before marriage that she was a Type 1 patient and needed constant care, her husband and in-laws refused to bear the cost of her treatment. Her condition worsened when she stopped taking insulin shots fearing that her in-laws would trouble her. Finally, Swapna had to opt for a divorce and move back to her parents.

“Women with Type 1 suffer the most. Usually, their partners show an abominable reluctance to pay for their treatment,” says Dr Jhingan.

The head of the department of endocrinology, NRS Medical College and Hospital, Calcutta, Dr Nilanjan Sengupta, points out that taking care of a Type 1 patient is a “lifelong” commitment. “Such a patient needs two to three shots a day, blood-glucose monitoring and a strict diet control. No matter how updated the treatment is, for reasons yet unexplained, the metabolic state of Type 1 diabetics is brittle. Their blood sugar levels can be erratic one has to be always ready for hypoglycaemia bouts (low glucose reactions) which can lead to loss of consciousness.”

Besides, Type 1 diabetics can develop other health complications such as kidney, nerve or eye problems in their mid-30s. “If diabetes is not properly managed in women, it can lead to infertility,” warns Dr Sengupta. “Managing pregnancy of Type 1 diabetic women is a challenge for doctors. Type 2 pregnancy does not pose grave risks.”

Doctors, however, stress that with proper control of the disease, people can lead normal lives.

Some advise pre-marital medical counselling to dispel myths about diabetes. “This helps people understand the medical aspects and disease specifications and cope with diabetes in a better way,” says Dr Priyanka Rohatgi, spokesperson, Indian Dietetic Association, Bangalore.

She adds that post-marriage complications arise mainly due to poor management of the disease, erratic lifestyle and skipping medicines. “Almost 20 per cent patients feel they can avoid being on medication daily and try other ways which are not scientifically proven.”

Regarding the fear of whether Type 1 is hereditary, doctors say that chances of this condition passing on from Type 1 parents to their children are less than those in Type 2 cases.

Doctors fear that Indians do not pay much attention to diabetes. “As the level of ignorance is quite high in India when it comes to managing diabetes, there should be interactive websites and self-help groups to generate awareness and also exchange experiences,” says Dr Mishra.

For people like Udit and Vineet, help was at hand. For thousands of others, diabetes continues to be a curse.

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