• TTP – Thrombotic Thrombocytopenic Purpura – A Rare Disease That Could Kill You

    Blood

    Danger Level: High

    What is it?

    TTP is a life threatening disease in which platelets (the cells in the blood responsible for blood clotting) are missing and red blood cells are destroyed.

    Who gets it?

    It’s a rare disease: 1 person out of 4 million a year will have the disease. It usually affects men more than women (but not by much), and it usually happens around the ages of 30-40.

    What causes it?

    When a blood clot is formed, platelets aggregate together to seal the wound out of which blood is coming out. They do this with the help of many small molecules, one of them is VWF – or by its long name: Von-Willebrand Factor.

    ttp

    In TTP there is a problem with VWF – it’s getting larger and larger because the mechanism responsible for cutting it to its appropriate size is defective. That’s why platelets are aggregating like crazy and block blood vessels. This causes the destruction of normal blood cells and other things mentioned below.

    How does it feel?

    5 things happen to you if you get TTP:

    1. Confusion, seizure and even coma: Because blood vessels to the brain are clogged by the platelets, blood doesn’t reach your brain properly.
    2. Renal failure: Your kidneys will stop working, because blood won’t go to your kidneys as well.
    3. Fever
    4. The number of platelets goes down: Because they’re all clumped together
    5. Anemia: Which is loss of your red blood cells. It happens because they are destroyed when bumping into those clumps.

    How is it discovered?

    Whenever someone comes to the ER with those 5 things (or some of them), the doctor will quickly take some blood out and do 2 things:

    1. Look under the microscope: Where they will see those destroyed blood cells. They will look something like the picture below.
    2. Let the lab count it: The count will show that the number of platelets is down. Other blood tests will show that blood cells are being destroyed.

    image You can see that some of the cells are round, but some are deformed. (Photo by Ed Uthman, MD)

    How is it treated?

    The best way to answer that: FAST! Without the proper treatment, there is about 100% chance of dying from TTP.

    The treatment involves a process called plasmapharesis, in which blood is removed from the body and blood from a donor is returned back, this way taking out the elements in the blood that caused the disease.

    What happens after treatment?

    In 3 weeks up to 90% of people will be mostly disease free. But: The disease can come back in 1/3 of people in the months and years that follow. They should get their blood checked periodically!

    The Bottom Line: How do I avoid it?

    Unfortunately, there is really nothing you can do to avoid it. If you fear that you have TTP, according to the information above, you should seek medical attention immediately.


    What next?

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    Related posts:

    1. TTP Explained Again (As Seen on House MD)
    2. Sickle Cell Disease – When the Shape of Your Blood Cells Can Kill You (As Seen On House MD)
    3. Waldenström’s macroglobulinemia – A Rare Blood Cancer That Can Lead To Strokes
    4. Mastocytosis – It’s Not A Tumor, But Its Growth in Your Body Can Kill You (As Seen On House MD)
    5. Naphthalene Poisoning – When Mothballs Kill More Than Just Moths (As Seen on House MD)

    Posted by Roy @ 5:45 am21.10.2008

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  • Facebook comments:

    • brittanythornton

      I have TTP and I never really got what it was. I get it now thank you for making this site. I feel better in a way because I know more about it now.

    • http://www.diseaseaday.com Roy

      You're welcome. Feel well :)

    • http://www.diseaseaday.com Roy

      You're welcome. Feel well :)

    • jessica

      hi im jessica im 20 and i got pragnet and found out that i got ttp it was the most scaryest thing iv ever been thro im doing fine right now but im scard that the ttp will come back.

    • karengobble

      I just got home from a week stay in the hospital with ttp…it happened so quickly…i was fine and the next thing i cld not tlk….very confused…a week before i noticed that i was bruising for no reason….when i was in the hospital i was tld that a young woman had been in there for 3 months for this and they had almost lost her several times….she did not get the confusion but had memory lost…she is 27 and i am 58….I believe in healing and prayer and the drs said it is a miracle that i was able to leave the hospital after only a week….please take notice of these symptoms….act fast….i kn it says that 1 person out of 4 million cld get this…trust me…in the small area that i live in there had already been 3 people one who died that had this…just make yourself aware of what to look for…..

    • miss_g08

      My friends sister in law is in hosp with this now and its not looking good. she has the worst form of this terrible disease. She is to trial and new treatment which is yet to be released so its still in the trial form and comes with the most horendous side affects. the worse case is that she could wind up having leukemia the poor girl has 3 children in which the youngest is 12 wks old and the blood supply they have been giving her works for a little while but then she goes down hill, i believe she has been resussed. twiece. She is on dyalsis as her kidneys have failed and now she is on the donar list but won't receive anything til the disease has been treated cause all it will do is kill those kidneys off as well. All thos e that have walked away from this rare disease should thank their lucky stars as its not looking good at her for this young girl.

    • jessicaseeley

      i got ttp after geting pragnet it was like the worst thing that ever happend to me i was so weak and i was in the hospital for a month on bed rest then i had to re lurn how to walk its such a bad disorder and i wish the best for every one that has this or is going to go thro this blessed be

    • odes76

      Hi had a friend whom was in the same state, their last resort was Chemotherapy. Within 3 days her platelet levels were continually rising. She was fortunate to leave the hospital a week later from the first dose. She had been in hospital for three months in total.

    • keephopealive

      I was diagnose with TTP February of 2009. It was the hardest thing I had to go through. It came on all of a sudden. When I went in the hospital my platelet count was 9,000. I was very sick but with the help of plasmapharesis. I recovered fairly quickly. It's almost been a year since my recovery and I think my TTP is back. I am a little scared but I know that God will see me through it all.

      • Becky Droneburg

        BeckyDroneburg in response to keephopealive, I was diagnosed January of 20009 with TTP I was flown by life support to hospital my platelet count was 3,000. I went thru 43 days of plasmapharesis, steroids, and 4 rounds of chemo, I too had to learn to walk all over again, my body was so weak from this, I was on life support dialosis. Well I finally went into remission until August 5th ,2010 I once again relapsed only had to stay 3 weeks this time and I was coherent this time versus being in a coma the first time I also had plasmapharesis and 4 more rounds of chemo platelets have been staying pretty stable so far cross my fingers I also live in fear that it could happen again and if it does wonder if it will present itself with the same symptons I also had the power of prayer and God behind me!! I suppose there is a reason for me to have this and to survive two episodes,

    • Nandi Springs

      HEY my name is Nandi Springs i found out i ttp in sep.09 i had a relapse feb.10 im so scared that is ttp thing will take its toll on me but i believe that God is a healer and he will get me through this.

    • 313detroit

      How common is it that symptoms from Lupus would trigger TTP ? My young cousin passed from complications with Lupus and TTP? I too thank you for having this site and in reading the comments I see that many others appreciate you and have been affected by this disease.

    • http://www.diseaseaday.com/ Roy

      Hi,

      Sometimes autoimmune diseases such as lupus (We wrote about it here: http://www.diseaseaday.com/whole-body/systemic-…) can present as TTP. I'm sorry to hear about your cousin. TTP is indeed a horrible condition.

    • andrea

      i just lost my best friend to ttp on monday. his first episode was 6 yrs ago at the age of 38. i'm so heartbroken…

    • kind

      CAN TTP BE PASSED ON FROM PARENT TO CHILD
      MY FATER DIED FROM TTP BACK IN THE 80' CAN I HAVE IT OR PASS IT ONTO MY CHILDREN

    • http://www.diseaseaday.com/ Roy

      Hi,

      There is a rare kind of TTP called congenital or familial TTP which is genetic – meaning it can be passed on. Your father probably didn't have that kind since it affects mainly children.

      The other type (Acquired or idiopathic TTP) is usually not genetic, so there is no reason (as far as known now) to be afraid of passing the disease to other generations.

    • Pamela

      My mother passed away from this horrifying disease in 2003. It is a cruel disease. She was life flighted to Vanderbilt hospital in Nashville where she was in a coma and on life support for 3 months, and was recessitated 3 times. She did come out of the coma and was in a hospital here for 4 months. She had plasma exchange daily, dyalisis 3 times a week, and chemo. She did survive only to relapse 2 months later and pass away, she was 64 and perfectly healthy up until the one day she had a seizure and went into a coma. The only thing we know that could have caused it was Plavix. Is this drug the only one known to cause TTP or are there others?
      Also, my prayers are with the families of loved ones with this disease.

    • http://www.diseaseaday.com/ Roy

      Hi Pamela,

      I'm very sorry about your mother. TTP is indeed a hard disease to deal with.

      Regarding Plavix, it's one of the drugs not often connected with TTP. There are others more commonly associated with it. This includes some types of chemotherapy, as well as other drugs: cyclosporine, tacrolimus, quinine, ticlopidine, and less than those oral contraceptives and valacyclovir.

    • christeen

      Hello Pamela,
      I feel your pain, I lost my daughter to this terrible disease may 25, 2006. The pain seem like it just happened. We took her to the hospital because she had stomach pains and in 48 hours she was gone. Had never bee n really ill before that so we don't really know what bought hers on. I'm doing a research for my school project on this disease with hopes that it will help me to understand what happened. My daughter has 4 children who are all grown now but the were 15, 17 18 and 23 years old, they are really struggling with life since their mom has been gone. So pray for us as we pray for you. join a support group or find ways of talking about it I'm on face book with several others who have lost a love one to Ttp.
      you can also email anytime you need to talk.

    • christeen

      I read Roys' response to your question and I agree with him but because you know this happen don't live in fear with it but know the symptons and signs and most of all know your body and have good communication with your doctor.

    • mrs. v

      my husband has TTP in2008 he had a seizure he was by amb to the er dr Todd told me he was going to die, he hid ttp 7 day later he was he stop breathing and 65 days later he was still in the hospital. his body hurt all over, very bad head ach , nurve pain ,the drs don't no what to do.
      1/28/2009 it come back he stop breathing for 3 days he was in the hospital for 35 days he return 2 weeks later and stayed for3 weeks ,he went home with infused medicatiom for 1 month .because TTP my husbanb has high blood , blood sugar out of controle he has head ach pain body pain he burn on the in side his body is very weak TTP is still taking his body down. he cant remember, we try to go places and get very sick, he take his medication but TTP has stolen our life he is like a child in rage. crosbi@att.net 1 day change our life from riches to the clothes on our back.

    • Amy

      In 1999 I was 18 years old, I should have gone to prom. I should have graduated but instead I spent 2 months hospitalized with TTP. It was the worse thing, I’ve ever had to go through. I had chemo, daily plasmapharesis, they experimented with high doses of steroids and finally after they took my spleen out I went into recession. Now, 11 years later I have a severely screwed up immune system. So, even though I survived a rare blood disease I’m haunted by it. If your reading this, I’m sorry if I sound like I’m having a pitty party. I’m not. Because, I can still be thankful I have my life and my family.

    • jessica

      hi amy im jessica i went threw the same thing last year i was pragnet and i got the ttp from it i was so scard half the time but what kept me going was my family and my son now im in racession but im allso scard it might come back

    • Bidou2

      My Husband Had TTP In June 2010 He Wen’t To The Emergency Is Blood Counts Where Only At 55 And Is Platelettes Counts at 31 He Was Really Sick They Tranfered Him To The St John Hospital Where He Had Plasma Treatment Twice Daily After Twoo Weeks He As Been Airlifted To The Halifax Hospital Where He Stayed 1 Week And Came Home..Right Know It’s Only Been 3 Months And We Think That It’s Back Cause Is Platelettes Are Starting To Go Down Again..Does Anyone Of You Guys Know Somebody That Had This 2 Times ??

      • Tamra

        Hi, I have indeed had ttp relapses several times. I am a 42yr old female. I was first diagnosed with ttp hus in 2000 I was admitted into the hospital with a platelet count of 3,000 or (3). I was in kidney failure etc.. I recovered after plasma exchanges and loads of steroids. I was disease free for 7 years. In 2007 my platelets began dropping. I again was hospitalized for many weeks and recovered only to relapse again in 2 months and then 6 months and again in 2009. There is an enzyme that your husband can be deficient of called ADAMTS13. He should be checked for this. There is also a drug called Rituxin that can help. Research it online…ADAMTS13 and RITUXIN. So far so good for me…after my rituxin infusions. Hope this helps. T. Franklin

      • Dashell3

        Hi Tamra
        My husband has had relapsed 12 times in 12 years. We now go by the adamts13 test and he uses rituxin also. He is currently taking infusions because he has relapsed again and the adamts13 is showing in danger zone. I hope all is well for you.

      • Dashell3

        Hi my husband was first diagnosed in 1999 with rare strand of TTP. He has survived 1 coma, and we almost lost him 4 times. Today is March 7, 2011 and he has come back every year this will his 12th time. He is in the hospital today having chemo treatments. I am so glad we found this site, he has never been able to talk to anyone with this disease. I hope your husband is doing ok. We can be contacted at dashell3@yahoo.com

      • Cammyj3

        I have relapsed 4 times with my ttp. The last time that I was in the hospital and they got my platlet count back to normal, they gave me a Rotuxin treatment. Its supposed to prolong relapses. Thus far it has been three years. Ask your husbands hemotolgists about it. I hope this information will help your husband.

    • Babygirlnfla29

      hi i have ttp i got it when i found out i was preg back when i was 20 years old i was 23 weeks preg when i had to have my son who didnt live. they ran blood test and found out thats what i had .,. i have been threw everything you can think of for my disorder. i recieve plasma every three weeks to help keep my body on a steady path i should say i was always told i wasnt able to have children but with gods help and willing doctors i am going to try again now that i am 31 i figure maybe back then i wasnt able or ready to and my body just couldnt handle it but now i found out things i can do to maybe help me along i can recieve treatments (plasma) while preg . i guess i am shareing my story to add to all those i have read and thought i was alone and realize i wasnt and my faith is strong and i have a postive attitude i figure god will bless me with a child … so to all of you who every thought you couldnt get threw anything you can just have a little faith a postive attitude and someone to help you threw it all!!!

    • molly

      in 1998 a few days after giving birth to my son, i had a stroke and was rushed to the hospital. they found out about a month later what was wrong. TTP was the culprit. after a year of plasmapharesis, they removed my spleen. i was on steriods for six months afterwards. i have been great since but i worry about a relapse. sorry to hear of all the loved ones lost.

    • Karley Breaux Foundation

      http://www.facebook.com/pages/Karley-Breaux-Foundation
      Our 17 year old niece passed away from TTP in 2008. We have set up a foundation in her name to raise awareness of this deadly disease. She was diagnosed post autopsy.
      We don’t know how long she had this before her death. We noticed some changes with irritability and we think it onset at puberty. My thoughts and prayers are with the ones suffering with this disease.

    • Andypop89

      HI. On August 8th 2010 I went to the ER thinking I was about to give birth to my precious baby girl. However everything changed in a blink of an eye. I lost my daughter and when they started medicine for me to give birth they ran some test. My blood platlet level was extremely low it was 6,000. So my obgyn called the lifeflight out of UAB to come pick me up. Once I got there I delievered my daughter and got very sick afterwards. At the time I also had bilateral retina detachment ( i was blind). As the night grow my throat swole shut so I had to have a breathing tube put in, then they found out I had TTP I was only daily plasamaphresis for 2 weeks and spent 2 weeks in SICU where they thought I wasnt going to make it. But with gods grace I pulled through. After 3 weeks in the hospital I was released to come home, my doctors at UAB continued to study me b/c I was still sick from this diease and they didnt understand why with the plasama I wasnt getting better quicker. So they sent my blood along with my mother father and sisters blood to switerzland to find out how I got it and if my family had it too (hereditary ttp). We sent the blood off sept and just got the results back 2 days ago. I have TTP USS syndrome( blood diease) plus 2 enymes no one has ever heard of before. I am also the 64 person in the world to have this type of TTP diease. I’m going to the blood doctor soon to see how often I will have to start back up treatment, but I’m very thankful to have my life. I’m sorry for all of you others dealing with this diease bc its not a easy thing to deal with. I pray for the families with this diease that may god bring peace to your family. thank you for letting me share my story and if anyone has any questions please feel free to ask

      • Andypop89

        just wanted to comment I’m thankful that my mother father and sister only carry have of this TTP gene but I carry the whole gene.

      • JavieFai

        Hello Andypop89,

        Where exactly did you get this genenic test done for TTP? As my family would be interested in having this test done also. My elder Sister died of TTP last year.. still trying to make sense of it all in my head. The Doctors here (in England) say there is no way of determining the cause. If you have the chance to answer, please, my e-mail is: javiefai@live.co.uk and if anyone else reading this message has any information they feel would help, I’d be grateful.

        Thank you.

    • Xitalianabella

      My name’s Nicole, I’m 21 years old and currently in ICU dying from this disease. I would first like to say that I am happy from the bottom of my heart for everyone that has gone through this disease and has lived and are now healthy. You got lucky, and should count your blessings every day. It started in June of 2010. I was on the beach and my boyfriend at the time noticed that I had bruises my back and the back of my legs that weren’t there the day before. I had never been sick in my life, and was always getting bruises from playing sports so I didn’t think anything of it. These bruises kept popping up and I was getting little red dots on parts of my body, but once again I paid them no mind and continued with my life. On July 16th I was rushed by ambulance to the ER with a pain in my side that I couldn’t even put into words. I couldn’t move, I was screaming at the top of my lungs and throwing up everywhere. They took bloodwork, gave me pain medicine and in about an hour 3 doctors came into my room to tell me that they had absolutely no idea what was wrong with me but that my platelets were at 3,000 my hemoglobin was at 4 and my liver was failing. They would try what they could, but there were zero guarantees and my spleen needed to come out as well (which obviously couldn’t be done because they were worries about me bleeding to death from a papercut so they obviously weren’t going to do surgery lol). I’ll keep an extremely long story short and just say that i have gotten plasmapheresis every day since then, 4 rounds of chemo, been on life support 7 times and they were able to take out my spleen and diseased gallbladder back in October. 2 hours ago I was told I am in complete organ failure. Its sad to say, but I’ve been through so much pain and heartache that at this point I’m fine with dying. I can’t figure out why, but it must be my time. I’m receiving 4mg of pushed IV dilaudid every hour and it helps with the pain. All I can say is that I hope to god they get the money to do WAY more research on this disease to help people in the future, because it WILL swallow you whole.

      Thank you so much everyone

      • Reginald Canty

        hi nicole, i pray that you are comfortable, and i commend you for your courage. I know god still has a plan for you and it may be speaking to others . Make a friend of jesus nicole, and hear his word…..I know he will deliver you from your pain and discomfort and have an eternal resting place for you when it is you time. Your time doesnt end on earth, and ive found much comfort in knowing where my loved ones are when they depart this world. Im assured that he has these things in store for you and your blessings will continue despite your condition! god bless you and KEEP you nicole and i know your courage will lift many and provide you with a sense of life purpose and I will certainly pray on you behalf and youre loved ones! And remember god loves you and so do I.
         

    • Michellebrocks60

      my mom had a stroke in jan. this is how i found out my mom had ttp it was a very horrorable feeling. not understanding all the medical talk i did not know how rare and serious it was until she had another stroke march 7 2011. two strokes in two months (cause ttp). its scary! now reasearching and reading all the material at hand i have found this page explaining ttp in a languge i can understand. thank you very much.Now i can try to take hold of my emotions (guilt) of not knowing what this disease is its cause and effect. thank u again

    • Cammyj3

      Hello all. My name is Camille and I have ttp. I was diagnosed in 1995. How I found out I had it was because my period came on and because I had no clotting factor in my body I was continuously bleeding. By the time I got to the hospital and they did blood work my platlet counts were down to 12. I was having seizures back to back and fell into a coma from the lack of blood and oxygen to my brain. They told my mother that my chances of survival were very slim. I thank God for a wonderful team of hemotologist who knew what they were doing in Christiana Hospital in Newark, Delaware. They saved my life. After months and months of plasma exchanges and blood transfusions I can say that I am a survivor. There were many times that I just wanted to give up, but I had a 1yr. old son at the time and I had to fight for him. That was almost 16 yrs ago. After my last relapse my doctor gave me a treatment called Rotuxin. It prolongs your relapses. Thus far it has helped. I have been in remission for the last 3 years. My prayers go out to those who have lost loved one to this illness, and for those of you who have it, you can make it with prayer and a strong faith in God! I hope this message will encourage those of you who feel like giving up!

      • Anizd

        Hi Camille: I was just reading your article – as my sister has just been diagonized by TTP and Scleroderma Raynauds. Thanks for the tip about the treatment call Rotuxin. And thanks for the prayers. Best wishes to you, Aniz, Toronto, ON.

    • Shiloh927

      My 21 year old son was just diagnosed with TTP three weeks ago. He has a serious immune disorder and we have been dealing with the complications since he was five. Because his doctors were monitoring a flare up of his prolific lymph nodes and interstitial lung disease he was getting a CBC done every few days. We were very fortunate that he did not suffer the dire symptoms that many of you have posted. His platelets dropped from his normal of greater than 400 to 74 and hemoglobin of 14 to 9 in just a few days. Because he already has a team of doctors who were at first concerned about a reoccurance of the ITP and hemolytic anemia that he had years ago, he was immediatley admitted into the hospital and diagnosed within a few hours. He started the plasmaphareses that day but has had limited success and so he had his first retuxin infusion about four days ago. I did not fully comprehend the seriousness of this disease until I was able to get to a computer and do my own research. He has been in the hospital for three weeks now and he is not much better but thankfully he is no worse. The posts on this site have been frightening to read and my heart goes out to everyone of you. Despite everything, I feel my son and I are fortunate to have great doctors and a large family who surround us with love, support and prayers.

    • Guest

      I wish there was a cure for TTP about 20 years ago. My mother died from the disease in 2 days. I think they did the plasmapheresis, but her body rejected it. She complained of headache the first day, was admitted to the hospital, and died the next day.
      I’ve heard the disease can be passed on to kids but genetic TTP is discovered at a young age. Is it possible however for me to get it when I reach the age she was when it happened to her?

    • Tewanna Bowling

      All you guys hang in there I was diagnosed with TTP in 2007, and I am okay sometimes I have leg cramps, and headaches. I get blood done every 4-6 months.

    • Tewanna Bowling

      All you guys hang in there I was diagnosed with TTP in 2007, and I am okay sometimes I have leg cramps, and headaches. I get blood done every 4-6 months.

    • Reginald Canty

      I also am a ttp survivor….I was diagnosed in oct 2008, my platelet count was 6000 and i was having mini strokes and hyperventilating with chest pains. 2 weeks into plasmapheres those symptoms ceased, and went for plasmapheres 6 more weeks, 4 rounds of chemo and steroid therapy.  I went into remission in july 2010, and now i just have bloodwork every 6 months. I thank god for the staff who attended to me and now I know this disease can be beaten because they now have more experience with this disease. I encourge anyone who has this disease or has a relative with it to trust god and he will deliver to you what you need and I pray for each of them…a speedy recovery and a return to a full portion of there health because it can be done and i am the proof! This condition is not as rare as it once was and the medical community has responded sucessfully. Following your drs orders, taking your medicine, and getting some excercise after plasma treatment has helped me greatly and im sure it will have positive effects for you as well. My prayers go out to each of you still afflicted and that prayer is that you trustgod and all that attend to you…..feed your faith and starve all youre doubts……for we are wonderfully made and blessed 

    • Nlee_car

      My son was dx with TTP in 2003 and we thought  he was disease free. He suffered another attack of the disease in 2011. Please pray for him

    • Littlefriendsla

      my sister recently died from this, within two 1/2 weeks of knowing this a serious disease and fatal

    • Msfaithful5

      Hi my name is Alora, my daughter Christal was first daignosed with TTP in October 2010.We learned of this disease by having to rush her to the ER, for what we thought was a very abnormal menstrual cycle.I must say I was very devastated with this news .She was 15 at that time. We were blessed that we were in Memphis TN where we have two of the best children hospitals, Lebonheur Children Hospital and world known St Jude Children Cancer Research Hospital. We were going to celebrate our 1 year TTP free anivesery this month. Unfortunately 1 week ago she was hospitalized with TTP again . Our doctors are wanting to try a chemotherapy drug ” Rituxin. I have done very  little research on this medication . Have anyone else been given this drug for treatment ? I pray that it work and that she can live the rest of her life TTP free. And to everyone that has TTP. a loveone with it   or have lost a loveone to TTP , my prayers are with you.

    • Suryalonso

      Hi mi name is marce, pray for my aunt shes right now at te hospital with ttp.

    • Suryalonso

      Hi mi name is marce, pray for my aunt shes right now at te hospital with ttp.

    • Ddickerson

      my mother passed 1-9-09 from ttp within 4days changed my life

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