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Hi, I recently heard that a friend of my brother is suffering from TTP and that he is having plasma exchange. My brother has told me that TTP is some kind of blood disorder, but he doesn't know much about it. It seems to me that TTP blood disorder is very serious condition. Can you tell me what causes this illness and can my brother catch it if he spends time with his friend?

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Hi, TTP stands for thrombotic thrombocytopenic purpura. It is a rare blood disorder. TTP is a condition in which the problem occurs in the process of blood coagulation. As a consequence there is a low count of red blood cells and platelets. Because of this a person who is diagnosed with thrombotic thrombocytopenic purpura often suffers from anemia and bruises easily among other things. This illness is caused by the disorder in an enzyme responsible for the coagulation of platelets. This enzyme in people with TTP is larger than usual and sticks to platelets forming blood clots that can endanger person's life. The condition is genetic. This means that your brother's friend has inherited it from his parents. So you can see that there is not a minimal chance that your brother might get TTP from his friend.
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Hello, I have TTP. Yes it is a very serious blood disorder and there is no cure for it or prevention for it. You just have to be in tune with your body. The only thing that helps is plasmapharesis (where they give you someone's plasma in exchange for yours). This condition does not run in my family. There is nobody in my family that has this condition so it is not necessarily genetic. The only thing you can do is just watch your body and be in tune with it to see if you have any odd symptoms. This is a very serious condition and it can be treated. It's just not worth it to wait too late! I did, and I wound up in the ICU with my kidneys shutting down and tubes down my throat! Take care!
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My mom came down with a very serious illness in 1999, one that was never diagnosed. She had heart failure, renal failure and was on life support. She was in the hospital for months, had three transfusions and had to go to rehabilitation to regain her walking abilities.

The doctors never really told us what was going on. I don't think they knew themselves really. She was given HIV tests a few times during her three month stay in the hospital but they all returned negative.

Since then, she has faired decently. Her health has never been the same she was left weaker.
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Yes, TTP is very serious, but everyone’s is very different. I have been diagnosed for 1 ½ now and I have had 2 bouts. However, it has not stopped me. I might be down for a couple of weeks…but when it is in remission I am totally fine. Everyone’s body reacts a little different. More research is being done about it everyday. Plasma exchange aka Pharesis is uncomfortable, but it is our best hope along with PRAYER and Faith. Tell your brothers friend to keep up with his lab work and most importantly, know his body well enough to get back in if he feels ANY symptoms. For my relapes 11/24/08- I drove myself to the hospital, because I saw the signs early. Know your body and demand blood work if they don’t offer.

The kelly henson TTP foundation- Dallas, TX
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This is very serious... My brother passed away within a month of diagnosed with TTP. He was receiving plasma exchange daily. When his platlete count was up (below normal but up from the previous day) the doc stoped treaments. Even though exchanges started again, he never recovered.
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It is VERY serious I developed TTP after the birth of my baby so mine had nothing to do with genetics. My doctors have told me it might come back and it might not. They just dont know.
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I was diagnosed with TTP 7 yrs ago. and mine is not genetic nor is it possible for someone to catch it from you !!! I have had 78 plasma pheresis treatments and 18 blood tranfusions. when I first was disgnosed my platelet count was 2,000. If I hadn't have diagnosed when I did I would not have made it thru the weekend. It amounted to the good Lord looking out for me and several very smart doctor's.
I do pretty good most time beside's the chronic pain and all !!!!
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Hi I also was diagnosed with ttp in 1999. I was 3mths into pregnancy and was not taken serious until I collapsed. I was very fortunate to have a young intern fresh out of school. I was first diag with leukimia but after more testing almost a month they found I had a thyroid disorder (graves) once thyroid was eliminated the remaing symptoms found ttp. 11 bags of plasma per day and 2 blood transfusions. I was told it was a rare condition but during my stay at princess margaret
5 more cases arrived during my 10 mth stay. I have no genetic connection to ttp either. To the best of my knowledge it is an autoimmune disorder which in general terms means your body is attacking itself. This is why it reoccurs in some and not in others; I had two more bouts in 2000 (very stressful time) but have been symptom free since; definately keep an eye on thyroid 99% of people i know with ttp have thyroid issues which can throw the doctors way of course. My now 10yr old daughter and myself became test subjects for the ttp medical journals. Happy to report she was born 8wks premature at 4 lbs. She is now in grade 5 healthy happy normal. Funny part when she was born her cell counts were 6 times higher than mine lol
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Hi,
I was diagnosed with TTP in 2008. I went to the hospital when my symptoms were severe. I couldn't walk a few steps without stopping out of breath, i was pale white with blue lips, and i had bruises and horrible headaches. At first, they thought it might be leaukemia, but then found it was TTP. plasma exchange isn't painful, just very uncomfortable and scary. I've had one relapse right after i was discharged from the hospital and i have been fine since. You cannot catch TTP from anyone.
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My mother died from complications of ttp at the age of 27 in 1967. I am 48 hrs old and believe i have symptoms of the disease. My RBC count is 3.93 - low. what else should i look at on my blood results. I am worried my family physician doesnt take my concern serious since this is such a rare disease, especially the inherited type. I didnt even know it could be inherited until a week ago from an aunt who helped care for my mother. I was 7 when she died, i was raised by grandparents my whole life in another part of the state. Please help me with the blood results. My dr's staff keeps moving my appt farther away and i am getting nervous. My forearms have lots of small purples bruises on them.
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TTP is serious. You need to see a qualified hematologist. Platelet count and retic count are important blood numbers. There is a test to measure the enzyme involved in ttp (ADAMTS 13). First time I got sick in 2004, it took three hematologists before someone made the correct diagnosis. When I relapsed in 2007, the hematology department in a world renown hospital did not catch it early enough. It is a rare disease, and few doctors have actually seen early stages. I am guessing initial symptoms can vary. One of my doctors is an international expert, and he was surprised by the early symptoms I had on both occasions. This disease has had a disabling impact on my life. I am lucky to be alive, but have persisting symptoms that doctors don't seem to understand.
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I went to a hematologist and had him look up online the tests I needed. He said they were all fine but the lab didnt run the TAG test correctly but wasnt really concerned about it. He said the unexplained broken veins in my forearms are a vascular problem. Last Wednesday, I went to a vascular specialist. He looked my forearms over and said "I wish I could tell you what is causing it and I can fix it but, I've never seen anything like it." He is sending me to a dermatologist now on the hope the dermatologist has seen it before. I said "its not a rash, why would I do that?" And that was his answer. I feel like I am on a merry go round but the hematologist guaranteed me I didnt have any form of TTP but he's never seen capillaries in the forearm break spotaneously either. I am so frustrated, it looks like c**p and it hurts when a bunch of them break. I've even sent a letter to Dr. Oz and the tv show The Doctors, of course I highly doubt if it helps but I didnt know what else to do. I feel like one of those cases on Mystery Diagnosis but I'm not on the brink of death...yet.
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my ex boyfriends mother dead of ttp at I U hospital in indianaplis and she was 49 just turned 49 on jan 3 2008 and she died march 28 2008 so ya it is a big thing they cant find anything to fix it she died once and they bother her back to life and then she had a nuthere relapes in 2004 they cought that one in time and now this so she had a ruff life but she lived it and i have been thought alot to with her so ya :'(
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Hello, My mother died from TTP in 2001, just three days before 911 in september, she was only 53 and leaving behind 7 kids and 2 grandkids. This was a horriable day in our family and we did not see it comimg. Back in 2001 you could not test for it, so we found her already have had a total of 6 strokes, kidneys not working and in a coma, it was aweful!! I am now looking to see are their ANY support groups out there for the family and friends, for people whos family member died of this??? If anyone knows PLEASE,PLEASE contact me. My email is ***this post is edited by moderator *** *** private e-mails not allowed **
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. I pray for all families that had to walk through this.
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