TAR Syndrome Support Group
TAR Syndrome (Thrombocytopenia and Absent Radius) is a rare genetic disorder which is characterised by the absence of the radius bone in the forearm, and a dramatically reduced platelet count. Platelets are the clotting agent in blood. A lowered count leads to bruising, and at worst, life-threatening haemorrhage. .
Hello
I am a teenager who has a mild form of TAR Syndrome. I had one of the i suppose luckier cases of TAR Syndrome. I would just like to tell those parents wondering what is going to happen in your child's life that it's ok to wonder. Being a Syndrome every case is different, so I can't help everyone who asks, but i geuss my point is, if you want to ask i can tell you and i will tell you the truth because i have lived it. So please feel free to contact me if you have any questions.
I am a teenager who has a mild form of TAR Syndrome. I had one of the i suppose luckier cases of TAR Syndrome. I would just like to tell those parents wondering what is going to happen in your child's life that it's ok to wonder. Being a Syndrome every case is different, so I can't help everyone who asks, but i geuss my point is, if you want to ask i can tell you and i will tell you the truth because i have lived it. So please feel free to contact me if you have any questions.
deleted_user
Hey! I have a grandson that is 3 months old and diagnosed with TAR syndrome. Any info that you have would be helpful. Do you know anyone that has had it corrected and do they have full function? I am terribly worried about my grandson. I am told he can have surgery at 1 year if labs look okay. Let me know your input...thanks!!!!!
deleted_user
Hey. My name is Cindy Lynch and I can answer just about any questions you probably have about your grandson with Tar Syndrome. My son is eighteen and has had reconstutive surgery on both his arms at least seven times. Call me if you need to 678-662-1640
deleted_user
TAR syndrome is the hardest in the beginning. I am parent of an over 30year old who has a very regular life and works full time in education. The splints can be most annoying when they are small but well worth it in the end! I would encourage any parent in this situation to locate physicans who have dealt with this specific thing for many years and most of all to encourage baby to engage in all the things other kids do( in a safe manner.)And yes they will most likely color, scissor, date, go to college and drive!
deleted_user
My name is Lisa and am 54 yrs old n have TAR syndrome. Im married for 24yrs n have a son age 20 in college. I have lead a normal life of school, college , camp, driving with no special equipment but did have surgery throughout my childhood. I can answer any question you or anyone might have. please email me at ljreiman@yahoo.com.
Sarahj88
Hi my name is Sarah. I'm 30 years old and have TAR syndrome. If anyone has any questions I'd be happy to answer them.
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