ttp blood disorder

Guest over a year ago

Hi there. I am soo sorry for your loss. I am a 3yr survivor of TTP. I was diagnosed in October of 2007. Unlike the many other patients, i was asymptomatic. The only reason I even went to the doctor was when i started to urinate blood. Thank the Good Lord for that sign. Had i waited just 1 more day, I would not be alive. I, too, have absolutely no record of this disorder in my family so it's not genetic. The doctors aren't even sure of the causes. They told me it could be the birth control pill or extreme stress. When i challenged them on the birth control, citing many men, boys, babies, seniors, etc have the disease, the blamed it on stress. The doctors really don't know the cause yet. More research needs to be done. 10 years ago, the fatally rate of this disease was 100%. They had no treatment. Today, they have plasmapheresis transfusions which increased survival rate up to 90%. There are many support groups online. Just google ttp suppport groups. I was lucky enough to have great medical care and doctors who knew the disease. Hang in there. It definitely helps to talk to people.. May God Bless you and help you through this!!

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Guest over a year ago

hello iam a concern mother, my daughter has been diagnosed with TTP and we are looking for a good hematologist in the houston tx area. ive almost lost her once not knowing what was wrong with her now im trying to find out as much as i can about the diease. :-(

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Guest over a year ago

I have heard that Baylor University has a good hematology program. I think the person who discovered or found use for the ADAMTS-13 test is a Dr. Moak (?) from Baylor.

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Tammylyn71 over a year ago

I am currently undergoing treatment for TTP. I was diagnosed December 23/2011 and just released form the hospital as an outpatient to continue my treatment. This is a very scary disorder and has many forms of symtoms. Most of mine were nurological and stroke like. My speach was affectected to the point where I knew what I wanted to say but could not verbalize. I had severe headaches that lasted for days, irritability, confusion. I also had a lot of brusing and weakness. The first thought the doctors had was stroke and after being sent for a CT scan with results coming back clean they decieded to do blood work. Had it not been for the treating doctor at my local emergency department recalling his early education I would not be here today. I was sent to a hospital with a very large hemotology team in Ottawa where the began the treatments of plazma exchange, rebiuxtab, and vientechristine with is a chemothearpy treatment. Treatment was intensive with plazma exhchange in the beginning I was recieving 2 exchanges a day. I am now done to 1 a week and happy to report that my platlets and red cell count are great. I have been told that there is a possiblility of relapse and will need to keep a very close watch on the way i am feeling in order to be on top of relapse. This is something I do not wish for anyone to go through I only remember bits and pieces of my ordeal but my family will live with this experience for ever. I think more people need to be made aware of this disorder so we can save move lives.

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Sybil Hamman over a year ago

Hello, My husband died from TTP in 2001. He was 28 years old. He had bad headaches and we thought it was from allergies. As a child he had lots of nose bleeds that were unexplainable. He became ill quickly. I thought he had the flu called 911 and 4 hours later he was gone. The autobsy could not reveal it was TTP due to the blood vessels had already shrunk in size, but the doctors were certain TTP was the cause. I too pray for anyone who had to experience this. God bless!

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Gemma over a year ago

Hi I'm from the Philippines and I'm glad you are in now in remission. I lost my sister to TTP last December 18, 2011. There is still so little information and cases of TTP in the Philippines. The experience of watching my sister suffer and eventually die of TTP will forever haunt me. If only we were able to save her. I do also wish that others will not go through the same ordeal.

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Carolyn Knight over a year ago

I have a condition where my white blood cells are at a very low level
right now it is at two is this the same thing as what you are talking about I was going to the Cancer Center to be treated but now the Dr.
says there is nothing they can do for me and he did not need to see me any longer after three years. I jist have to keep strong antibiotics
on hand so if I get sick I have to take them immediately,

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kygal98 over a year ago

i too have TTP, the plasma fresis did not work for me....i had to take a drug called Rituxan one treatment a week for 8 weeks...my ttp was caused from chemotherapy treatment...i spent 14 days in the U.K. cancer center.....so plasma fresis does not work for everyone..it did shut down my kidneys and i spent 11 months on kidney dialysis....3 times a week 4 hours each time! thank god I have now been off dialysis for a year ....kidney ceatin is not normal and probably will never be...so see a nephorologist every 3 months...ttp is a very serious disease....so please educate yourself on the issue...there is alot on the internet about it...it is not contagious!!!!.god bless you all.....

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Julie over a year ago

hi my sister died of ttp three years ago because it was not picked up early and the doctors did not have clue. It can be treated . She inherited it from my dads side dnt be scared pray faith and healing into his body God is love julie Moodley

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stephanie over a year ago

Hello I was diagnosed with ttp 10-28-12 and before that I have never been sick. I was given several HIV test in which all came back negative. I don't really understand the disorder but learn something new everyday. I value life and my relationship with the Lord a lot more now.

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Guest over a year ago

I was struck by TTP back in 2005 after giving birth to my son. I never had any complications until after having my son. TTP attacked my kidneys which left me on dialysis for two months. To treat TTP, I went through plasmapheresis which left my body weak and tired (along with the dialysis). After gaining function of my kidneys and my platelet count getting back to its normal count, I have not been hospitalized for this since however, I do have chronic kidney disease and visit my doctor every six months. I have found that TTP attacks people differently, according to their medical situation and then TTP can be acute or inherited.

Prior to TTP attacking me, I had never heard of the illness and I think pregnant women should be aware of this because it is so rare, especially for those that is not inherited. If any women who have went through this after having birth or men whose have love ones who has been through this ordeal would be interested in sharing their stories, journey, recovery, etc. with others, I have thought of creating a community on Google+ and/or Facebook so everyone can communicate and share easily. If anyone has any other ideas of where I can link with others who have went through this, please feel free to share. Thanks in advance.

Kicia

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dennyahn over a year ago

My mother was diagnosed with ttp just this year 2013..We were not familiar with the ttp at all.. She has had 2 strokes and a heart attack.. Right now she is recieving plasma excahnge and seem to be doing better,But still have a long way to go.

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Guest over a year ago

Hello. Did you ever find a support group? I had TTP last year with no known cause other then I was taking Tamiflu. I am fully recovered without an lasting effect. I only lived through it because my husband and close girlfriend are both doctors and they recognized it immediately and got me to the right hospital. I hope you found a group to meet with, but there are only 70 cases a year in the U.S. and almost all will die so there aren't too many support groups. Did you google "Answering TTP?" Did your mom happen to have taken Tamiflu very shortly before she died? That is what cause my TTP. It is very rare for a 53 year old and a 62 year old (my age) to have TTP at all.

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Guest over a year ago

I am a survivor of TTP I was diagnosed in july of 1997 after i gave birth.I was in remission for 17 years ,the TTP came back after i had a hysterectomy,the doctors used the same treatment 17 years ago plasmapheresis tranfusion to treat me.

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HarD331197 over a year ago

My cousin daughter got affected by Thrombotic Thrombocytopenic Purpura . that is curable or ? what treatment should take ?

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