NGOs provide help at hand, for city's young thalassaemic patients
Tue Apr 24, 2012 2:33 am (PDT)
Help at hand, for city's young patients....Menaka Rao
While medical facilities for thalassaemic children have improved, teenage patients have different problems. These include problems related to puberty (or the absence of it in some patients), growth deficiency and psychological problems such as low self-esteem. Last January, Sangeeta Wadhwa, 34, and Pankaj Sethi, 25, (both thalassaemia patients) started the Youth Thalassaemic Alliance (YTA) to deal with the problems faced by thalassaemic youth. "YTA was established in the memory of my sister, Payal, 27, who died in August 2010. She was a thalassaemia major patient and died of a heart attack because of an iron overload in the heart. I felt that if this could happen to my sister, who got the best treatment, then what about patients who do not have the resources," said Wadhwa, a Vashi resident.
The group has organised three seminars about thalassaemia treatment, psychological issues and endocrine problems related to growth and puberty.
Wadhwa said that many patients are pampered by their parents. "Many youngsters have not even completed their education. I know of a college student, who calls up his parents while taking transfusion and asks them to get him a gift or else he will not undergo transfusion," said Wadhwa.
Besides, most non-profits working for thalassaemia have been started by parents. "We felt that patients should be involved as they understand their situation the best. We want patients to be more responsible for their lives. We want them to do what normal people do," said Sethi, who was Payal's friend.
"We see a lot of children who have not attained puberty because of iron overload in the pituitary glands. Some parents of girls, who have not got periods even up to 18 years, have a misconception that they should not bleed as they anyway lack blood in their body. We try to explain to them that thalassaemia is not a bleeding disease and hormones released after puberty such as estrogen is good for the heart and development of the girl," said Dr Sudha Rao, professor of pediatric endochrinology, Wadia Hospital, Parel Many children lack the growth hormone or testestorone and need regular shots. Patients could also have diabetes, calcium deficiency and weak bones. "I have had to convince many parents just to take their children to a doctor," said Wadhwa.
URL: http://www.hindustantimes.com/India-news/Mumbai/Help-at-hand-for-city-s-young-patients/Article1-845224.aspx
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Better blood transfusion facilities help city's thalassaemia patient
Tue Apr 24, 2012 2:34 am (PDT)
On the road to a longer and fuller life....Menaka Rao
In their stride - Better blood transfusion facilities, medication help city's thalassaemia patients lead easier lives
Hemang Thakkar was six months old when his body sudden ly turned absolutely pale one day. Alarmed, his mother, Usha, rushed him to the hospital. Tests revealed that Hemang suffers from thalassaemia major, a hereditary blood disorder where the body does not produce haemoglobin, which carries oxygen in the blood. The absence of haemoglobin leads to progressive anaemia.
"Doctors said my son would not live for long," said Usha, recalling the 40-year-old incident. The doctors' prediction was in a time when thalassaemia major patients, who require regular blood transfusions, did not live long because of poor medical facilities. Blood supply was scarce, quality of the blood available was questionable and blood transfusion was administered to children with primitive equipment such as needles meant for adults. Patients also need iron chellation therapy every day to remove excess iron from the body.
But Usha did not give up. The Thakkars used to live in Baroda then. For 12 years Hemang traveled to Mumbai every fortnight to get a blood transfusion. In 1984, they moved to Mumbai.
"Then, very few children survived beyond the age of five," said Dr Rashid Merchant recalling the days when he started working at the Wadia Children's Hospital in Parel in 1968. "Complications included reactions to blood transfusions, contracting jaundice or AIDS from infected blood, iron overload leading to heart failure, diabetes, liver damage, and other infections," said Dr MB Agarwal, haemato-oncologist who consults at Bombay Hospital and Lilavati Hospital.
Hemang is now 40 and has lived to see the transformation in services and facilities that have helped increase the life expectancy. "It's a very healthy situation now. A thalassaemic person does not have to worry so much about survival now. It's about managing the disorder," said Hemang.
Advanced Facilities
For doctors, too, the change has been gradual. "My professor would tell us not to treat a thalassaemia patient as the child would not live for long anyway," said Dr MR Lokeshwar, who helped start a day care centre for thalassaemic children at Sion Hospital in 1988.
Blood transfusion facilities in the city improved with St George Hospital and the Red Cross Blood Bank starting day care centres for thalassaemic children. Now, there are 20 such day care centres.
"At a day care, a child is kept away from other patients to avoid infections. The child is monitored every time he comes for a transfusion. In most centers (except two) blood is provided free of cost," said Vinay Shetty, founder member of Think Foundation, that has helped establish seven daycare centres in the city.
In 1982, Desferal, an iron chellator drug that removes excess iron from the body, was introduced in India. "Before that, the drug was expensive. A cousin, who was a doctor in the US, used to send it," said Hemang. The drug has to be administered subcutaneously in the stomach or thigh for about eight hours every night.
"I know of children who said they preferred death to the process," said Dr Lokeshwar.
In 1984, a pharmaceutical company conducted its first human trial of another chellator, Kelfar. "We all participated in the trial," said Sangeeta Wadhwa, 34, a patient. Kelfar has to be taken orally but side effects include joint pains and gastric disturbances. Other oral chellators such as Asunr, to be taken first thing in the morning, are also available.
Better Monitoring
Facilities such as magnetic resonance imaging (MRI) help track iron depositions in the liver, heart, and other organs. "In addition, bone marrow and umbilical cord stem cell transplants are available, which are completely curative. Prenatal diagnosis is also available," said Dr Agarwal.
Dr Agarwal believes that thalassaemia is still difficult to live with. "Constant blood transfusions and iron chelation can be tough. Many patients end up with an HIV infection, jaundice, diabetes, a bad heart, liver and bones. Employment is not easy so the financial burden is huge. Those who undergo transplants have post-transplant problems including infertility. Marriages are rare," said Dr Agarwal.
URL: http://www.hindustantimes.com/India-news/Mumbai/On-the-road-to-a-longer-and-fuller-life/Article1-845223.aspx
