‘Timely blood transfusion, medicines essential for survival’
Sanjeev K Sharma
JAMMU, Jan 5: It was really heart breaking for the parents of five month old Mumtaz (name changed), from the border district of Rajouri, when a doctor at Thalassemia Day Care Centre in SMGS Hospital of Jammu told them that the child was suffering from the notorious hereditary blood disorder-Thalassemia. Shockingly, elder sister of Mumtaz who is just four years of age also suffers from the same disorder.
“Parents of Mumtaz were already familiar with symptoms of Thalassemia and they had also visited the Day Care Centre after the birth of Mumtaz as they feared that the new born baby might also be having the disorder but the child could not be diagnosed that time as symptoms of Thalassemia start when a child attains 5-6 months of age,” a doctor familiar with the case informed adding: “Parents of Mumtaz were already screened for the disorder when their elder daughter was diagnosed for Thalassemia.”
He further said that when Mumtaz reached the Day Care Centre, she was having blood deficiency due to which she had turned pale besides having ailments like liver enlargement and problem in spleen.
“Mother of Mumtaz had committed a big mistake by avoiding antenatal diagnosis during initial weeks of her pregnancy. Had the antenatal diagnosis done, birth of the child might be prevented medically,” the doctor continued.
Reliable sources informed that there are about 340 persons in J&K who are suffering from Thalassemia and 70 per cent of these are children who get blood transfusion and medicines from the Day Care Centre at SMGS Hospital and such helpful activities of the Centre have increased the life span of the people suffering from this blood disorder.
They also said that every year 3-4 new patients are added to the list of registered patients at the Day Care Centre.
“Blood is provided to these patients by J&K Thalassemia Welfare Society as they organise camps for this purpose. Blood Banks also support these patients and daily 20-25 such children visit the Day Care Centre for blood transfusion,” sources further informed adding: “Some children need blood transfusion only once in three weeks, some need it once in two weeks while there are also some who need it once a week.”
They quoted official records to claim that due to this blood disorder so far about 15-20 children have died in the last over 25 years.
When contacted, In-charge Thalassemia Day Care Centre, Dr. Sanjeev Digra informed that the unmarried youth should get themselves tested for being carriers of Thalassemia and two Thalassemia carriers should avoid marriage with each other as this increases probability for Thalassemia in their children.
“Still if such carriers get married unknowingly or due to some other reason, then during pregnancy the mother should get herself screened for Thalassemia by going for certain diagnostic tests to check if she is a carrier or not,” he said.
Dr. Digra further informed that if the mother comes out to be a Thalassemia carrier then her husband is also tested for the disorder and if both come out to be the carriers of the disorder then the baby in womb is put to an antenatal diagnostic test for checking Thalassemia in the baby while in mother’s womb.
“If the baby is tested Thalassemic then we ask the parents if they want to give birth to the baby or not and mostly the parents prefer medical termination of pregnancy. In this way, Thalassemia is prevented,” he continued adding: “All this process needs to be done in very initial stages of pregnancy as the antenatal test is done in 10-14 weeks of pregnancy.”
“The biggest exercise we can do to limit the spread of Thalassemia is that we should motivate the college students to get them-self tested for being carriers of Thalassemia or get such tests done at the time of their marriage and marriage between two such carriers of the disorder should be avoided,” Dr. Digra maintained adding: “If both the carriers of the disorder insist on marriage they can be allowed to do so but during the time of pregnancy the mother has to go for antenatal diagnosis.”
Other sources informed that more cases of this disorder have been reported from Jammu district but if population-to-patient ratio is considered then the twin border districts-Rajouri and Poonch have more cases.
“As far as entire J&K is concerned, negligible cases have been reported from Kashmir,” they said.
“If the Thalassemic people get timely blood without replacement along with medicines for removal of iron accumulated in their bodies besides regular medical check-up, they can live a normal lifespan,” an expert in the subject informed.
He claimed that in foreign countries Thalassemic patient can even live up to 70 years of age while the eldest Thalassemic patient in J&K registered with the Day Care Centre is 53 years of age at present.
The Day Care Centre at SMGS Hospital was established in the year 1996.
Another expert informed that ‘bone-marrow transplantation’ is the only permanent treatment available so far to treat this blood disorder but facility for the same is not available in Jammu because of which the patients have to visit Sher-I-Kashmir Institute of Medical Sciences (SKIMS) Srinagar, Post Graduate Institute of Medical Education & Research (PGIMR) Chandigarh or some other medical institutions for that.
“A girl child recently got bone-marrow transplantation after in a HLA matching camp organised by the Day Care Centre her bone-marrow matched with one of her siblings and her parents expressed willingness for the transplantation,” a reliable source informed adding that her transplantation was done some five months back with financial help from Coal India Limited and now the girl is leading a normal life.
“Coal India Limited gives an aid of Rs. 10 lakh for bone-marrow transplantation,” he continued adding: “So far the Day Care Centre at SMGS Hospital in Jammu is the only place which caters entire Jammu province but in near future such centres might be established at the newly established Medical Colleges in J&K to help the affected patients at their door steps.”
Also one such centre has been recently started in district Rajouri.
The J&K Thalassemia Welfare Society (JKTWS) is the only organisation headed by Sudhir Sethi which organises blood donation camps for Thalassemia patients.
When contacted, Sudhir Sethi informed that about 250 mg of iron gets deposited on the organs of a Thalassemia patient after receiving 10-12 bottles of blood and medicines are required to remove this iron from their body and these medicines are taken throughout the life.
He also said that on Thalassemia Day and otherwise also they organise blood donation and awareness programmes to motivate volunteers for blood donations so that people suffering from Thalassemia may have blood easily available in time.
Sethi counted weakness with continuously falling haemoglobin and indigestion as main symptoms for the blood disorder and said that sometimes the symptoms are not seen till the child completes two years of age and when a child is diagnosed for Thalassemia, the parents are also screened for being carriers of the disorder.
He informed that their organisation does not get any donation from anyone and functions on their own funds.
“As lifespan of Thalassemia patients has been enhanced by the activities of JKTWS and Day Care Centre, many of them have even got married,” Sethi continued adding: “Also many Thalassemia affected children have now turned adults and some of them are doing MBBS, some BDS, others are Physiotherapists while some are busy in family businesses and still some have done MBAs and many are Engineers.”
An authentic source informed that Dr. J.S Arora, In-charge National Thalassemia Welfare Society and renowned Haematologist, Dr. V.P Chowdhary, ex-HoD Haematology at AIIMS, New Delhi visit the Day Care Centre in Jammu every year and this year their visit is scheduled for February 2024.
“They examine Thalassemia affected children here and if they recommend some advance test to these children then such children are sent by the Day Care Centre of Jammu to the Centre of National Thalassemia Welfare Society in New Delhi for such tests.
Follow our WhatsApp channel
