Families go broke treating their children’s Thalassemia
Thalassemia is a genetic blood disease which leads to anemia. It is the single most commonly inherited gene disorder in the world. Scientists and public health officials predict that Thalassemia will become a worldwide issue in the next century, according to the Children's Cancer & Blood Foundation (CCBF), a US-based organization dedicated to the care of youth with cancer and blood disorders.
In Yemen, there are no statistics on how many children suffer from this blood disease. But, minimal education on the importance of having pre-marital tests to prevent the spread of the disease by sexual contact has allowed the number of Thalassemia patients to grow.
Thabet, who is originally from Taiz, went to countless hospitals looking for treatment for his children's blood disorder.
“I've spent a lot of money. I have sold everything I own just to afford blood transfusions, since this is the only remedy in Yemen,” Thabet said in his conversation with the Yemen Times.
Treatment of the Thalassemia requires blood transfusions every four to six weeks, according to the CCBF.
But many parents in Yemen are unable to afford the transfusions due to low income and insufficient charitable organizations to help with costs.
“Sometimes, I’m unable to pay for the blood transfusion or to find people who will donate their blood,” Thabet said. “Once I went to the Blood Donation Association in Taiz seeking medicine, but to no use.”
Thabet had to move to Sana'a, where he could take advantage of the services of the Yemeni Thalassemia Association. The association offers free medical service for patients.
The only definitive cure for Thalassemia is a bone marrow transplant, which is costly and not available in Yemen.
Statistics show that the number of people who carry minor Thalassemia, is as high as 490 million, in addition to 15 million with a severe form, major Thalassemia. Around 400,000 children are infected with the disease annually.
Thalassemia is a kind of anemia in which the body produces an abnormal kind of hemoglobin. Parents who carry the mutated Thalassemia gene can pass the disease on to their children.
Most people who carry minor Thalassemia are unaware of its inherited characteristics, unless they have a specific blood test.
The red blood cells in one out of five children affected by Thalassemia are normal. Children who suffer from Thalassemia only begin to show symptoms in their third month.
Symptoms are vomiting, pale skin, and poor appetite. They must be treated immediately through blood transfusion. Repeated blood transfusions have negative side effects, however, leading to iron overload in the liver and the kidneys. An additional treatment must be administered to get rid of iron overload.
International Thalassemia Day celebrated in Sana’a
The Yemeni Thalassemia Association organized a ceremony in Sana'a last week to commemorate International Thalassemia Day.
The slogan of the ceremony was “Together on a day free of Thalassemia.” The ceremony was attended by The Minister of Social Affairs, Amat Al Razaq Humad, The State Minister of Cabinet affairs, Jawhara Hamood Thabet and the Minister of Health, Ahmed Al-Ansi
Al-Ansi delivered a speech praising the efforts of the Yemeni Thalassemia Association. He also confirmed that the association cannot work alone, but needs community participation.
The leader of Yemeni Thalassemia Association, Dr. Ahmed Al-Maqrami, reviewed the crucial role played by his association in offering free medical services for patients.
He also stressed the importance of issuing a law to compel pre-marital Thalassemia tests for couples planning to get married.
The ceremony's program included several educational activities, such as seminars and lectures to educate people on Thalassemia. One of the association's important activities is visiting schools and universities in order to spread awareness about Thalassemia and its dangers. Pamphlets warning about the risks of marrying with no prior Thalassemia tests were distributed.
Pre-marital blood tests are an important preventive step for Thalassemia, which minimize the possibility of becoming a Thalassemia victim, according to the Yemeni Association for Thalassemia.