04/06/2024
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TAR syndrome awareness
What does TAR stand for? Thrombocytopenia absent radius syndrome.
Why is it important to know what this is? Because people are being born with TAR syndrome, and patients and even doctors don't know with TAR is and have never heard of it!
TAR syndrome is congenital, meaning it happens in the womb and the baby is born with this condition. Thrombocytopenia is low platelet level, meaning that this can prevent the blood from clotting the way it should, and making the blood thin. Absent radius syndrome means that the radius (smaller bone in the forearm in both arms) is missing completely making the arms appear short.
The risk of bleeding is very high, especially when the child is under the age of 2. After, the risks usually lessen and the child can usually live a very normal life. Although, this blood disorder can cause other issues, such as GI issues, bowed legs, vision issues and heart issues.
TAR syndrome is also classified as a very rare disease, as both parents have to be carriers of this genetic recessive gene. It is so rare, that only one in about 240,000 live births have TAR syndrome. Making these babies very special and one of a kind π
On the bright side, these children can live wonderful, long and full lives just like anyone else. They can have corrective surgeries if they wish, or not! Either way they tackle life with full force and love hard.
my amazing, beautiful, smart, sweet, bossy, adorable, loving, funny, niece Lola. She is at the right now in Kentucky being a star, along with many other children! Lola is only 2, and has already had 2 corrective surgeries on her arms, one on her legs, and a blood transfusion. She is fearless (except for the vacuum cleaner) and let's NOTHING stop her! If you see someone with a limb difference, or any difference, ask them about it! Educate yourself and include them. They will love to play and tell you about who they are. That's what is all about! πππ
A blog post is to follow about special dietary needs for TARS syndrome, photos and more!β¨οΈβ¨οΈ