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Saturday, September 19, 2015

Sickle Cell Anemia is a Blood Disorder.

    Base on the OMS statistics, 7% of the world's population are carrier of this blood abnormality. The early diagnose must be done, if not during gestation, through the Newborn Screen.  It is estimated that about 3,000 children are born with sickle cell disease each year in Brazil and 200,000 with sickle cell trait. Sickle cell anemia is the most common hereditary disease in Brazil, Africa, Central America and the United States. It is caused by a genetic mutation in hemoglobin, making the abnormal red blood cells and giving the shape of a sickle, so the denomination. In southeastern Brazil, the prevalence of abnormal gene is 2.4% (trait). In the Northeast reaches between 4% and 6% rising to up to 10% among blacks. According to the OMS, in Brazil there are more than 2 million white or black carriers of of sickle cell trait. 
      In general, the parents are asymptomatic carriers of the sickle cell gene (have an altered gene and do not develop the disease), but pass the altered gene to the child (when the abnormal gene comes in double dose, father and mother = homozygote ). It is estimated that each year about 1,000 babies may be born with the disease (two abnormal genes). The clinical symptoms may be present already in the first weeks of life, however in many individuals, symptoms such as anemia and bone pain, appear only after 6 months of age and are not usually recognized by the pediatrician. This ends up delaying diagnosis of sickle cell disease, on average, four years. However, the disease can cause fulminant infections in the first year of life. Without early diagnosis and specific medical care, 25% of these children will die before reaching age 5.

Friday, September 4, 2015

Most wanted and waited...

As I woke up today, and checked the calendar a thought just came to my mind and a feeling that took over my heart. September 4th... It happened to be the date, the birth date of the day we decided to bring a new addition to our family. The circunstances were of sadness in one hand. We were about to leave the hospital after a 4 days stay with our Prince Caesar. It was the first hospitalization in his life and due to Sickle Cell Anemia.
We were having lunch and packing our belongings, when the doctor came to show us the images of his brain. But at that point I had already told my husband that my wish was that our son would have the transplant. Then we told them.
It is hard to think that it took so long, and despite all that we went through on our way until today, looking at our children, and how beautiful and matched our kids are we can only thank God.
The road until here almost broke us apart... But now we feel it strenghted us.
We still one unit!!!! We are a family!!!!
And today we celebrate life!!!!! We are so gratefull for our babies!!!!

Tuesday, September 1, 2015

September is Child Cancer and Sickle Cell Awareness Month.

Lets put the word out and help others to understand what means to be born with this BLOOD Disorder....

Sickle Cell is a group of inherited RED BLOOD CELL disorders. An estimated 100,000 Americans have SCD, and about 1,000 children with the disorder are born in the USA each year. The disorder MOST COMMONLY affects African-Americans.
In someone who has SCD, the red blood cells responsible for delivering oxygen to the body become hard and sticky, and look like a sickle, that C-shaped farm tool.When Sickle Cells travel through small blood vessels, the cell shape causes them to get stuck ang clog the blood flow, resulting in pain and other serious problems such as infection, acute chest syndrome and stroke.
Normal red blood cells live about 120 days in the bloodstream; abnormal sickle cells usually day in 10 to 20 days, which causes a constante shortage of red blood cells with those with the disorder.
 SCD is diagnosed with a specific blood test, called Hgb Eletrophoresis. Babies are tested at birth, and prenatal testing is used to diagnosis SCD as early as the 11th week of pregnancy.
Relieving pain symptoms and preventing infections and other complications is the focus of SCD. Being well hydrated is essencial.