Wednesday, May 12, 2010

Between Love and thalassemia

Thalassemia is a hereditary disease is difficult to prevent. Couples at high risk, highly recommended not to marry because their offspring have a chance of getting sick of this blood disorder. Indeed a dilemma because people sometimes can not choose with whom they will fall in love.

Thalassemia is an inherited blood diseases may be preventable by avoiding choosing a spouse who brings the thalassemia gene. Thalassemia patients with damaged DNA that leads to non optimal production of red blood cells that often leads to anemia and a lifetime to do a blood transfusion.

By screening before marriage, couples are able to measure gene carriers responsibility what to do if they occur in the offspring. If each spouse has an innate gene could also decide whether to have children or not.

This is necessarily true by Ruswandi, one of the parents are thalassemia patients. When married, she and her partner does not know anything about thalassemia, until finally all five children suffering from thalassemia major was diagnosed.

Various efforts of both medical and alternative plans have been taken by Ruswandi. Medication and regular blood transfusions are also performed, but without success. Approximately 12 years ago, the younger son eventually died at the age of 20 years.

Losing a loved one also experienced by Aan, a resident of South Jakarta Mampang Prapatan. His oldest brother died of inflammation of the heart, which is one of the complications caused by iron accumulation in patients with thalassemia.

Aan itself also suffered from thalassemia major, so it must be routinely pumped excess iron in their blood. This time he was 28 years old, and still healthy even earning enough to work as administrative staff at the Center for RSCM thalassemia.

A teenager origin Bekasi, Ina also felt 'lost' as a result suffered from thalassemia. Because they have to undergo blood transfusion every month, he was often skipping school and later got an unpleasant derision from his school friends.

Unable to withstand stress, Ina is now 18-year-old chose to quit school when I was sitting in second grade in high school. Though experiencing regret, now he feels fine with his life the day-to-day he spent with the band playing.

The true story was told by the families and patients at the launching event thalassemia thalassemia '2000 Companion to Millions of Hope 'was initiated in cooperation with the Indonesian Thalassemia Foundation Prodia, Friday (29/04/2010).

Cure No Drugs, Just Alleviate Symptoms

According to Dr. dr. Amalia Pustika Wahidayat, APA (K) from RSCM Thalassemia Center, this disease remains to be treated. It's not a cure, but to reduce the symptoms and risk of complications that can arise because of it.

The most severe complication is the accumulation of iron, by the destruction of red blood cells. Iron can accumulate in various organs, especially the heart. Heart damage is the main cause of death in patients with thalassemia.

To prevent this, call Amalia dr deferoksiamin drugs that can be used routinely by injection. There is also a drunk, among others, deferiprone and deferasirox. Same function, to remove the excess iron.

In addition, iron can also be removed with an iron tool called a pump sailor. These pumps are used routinely by patients with thalassemia major Aan and others, as much as five times a week.

Can Be Prevented With Blood Examination

Cost of care for patients with thalassemia was not exactly cheap. In many countries, it will cost about 30 thousand U.S. dolas for one child each year. While in Indonesia, ranging from 200-300 million rupiah for one child each year.

According to Dr. Amalia, that cost is not worth the cost of prevention can be done. For thalassemia screening, the cost ranges between 400-700 thousand rupiah was examined.

Examination should be performed by each couple to be married, so I could know how much possibility to have a child with thalassemia. Couples at high risk, highly recommended not to marry.

A carrier thalassmia nature, or so called thalassemia minor, will not show any symptoms. But if he is married to fellow thalassemia minor, the opportunity to get a descent thalassemia major is 25 percent.

"The trouble is, people who feel healthy would not feel the need to conduct pre-marital checks. Actually, it could be a healthy person it is the nature of thalassemia carriers," said Dr. Amalia.

If the couple married and pregnant thalassemia minor, can still be done through the examination of amniotic fluid at 10-12 weeks of gestation. Only if it turns out they are positive fetal thalassemia major, the choice becomes more difficult because they have an abortion.

Some developed countries now require that it have thalassemia krining for couples who want to get married. Because the disease is declining, then the likelihood of patients will continue to grow from year to year.

In Indonesia there are at least 3000 babies born to patients thalesemia. Thalassemia patients seen since early childhood, or ranging from six months. If you have been hit by regular transfusions generally require 1-2 months.