ITP Awareness
To help find a cure for ITP and platelet disorders by raising awareness through education and informing the public. Learn More
Donate Fundraising: Platelet Disorder Support Associ...
Platelet Disorder Support Association, Inc.
Your donation goes to support the core mission of:
Platelet Disorder Support Association, Inc., a 501(c)(3) nonprofit
Recent Cause Activity
here is a link for a group for people with itp in the uk as i know the us have different methods of treatment
http://www.facebook.com/?ref=home#/gr...
i want every one to know about itp, it is a disorder that lowers the platelets in the blood there must be more done to make people do more to help fight this, please read and copy and post on your wall, to help my little grandson and all the other people with i,t,p, thank you
A friends son is challenged with this. Not many people know much about it. I'm trying to help spread the word.
my brother was diagnosed in 2008 about a week before christmas and it was really hard. he was only 5 years old and now its been about a year since he was diagnosed and its still just as hard. it effected alot of the people who loved him and it was very scary for everyone. please donate to help everyone who has ITP because it can happen to ur loved ones to. be thankful u or ur loved ones dont have it and help those who do. just think how would u feel if it was u or someone ur very close to was effected by this.
I'm an ITP patient who not only has low platelet count and high platelet volume, but also poor coagulation factors. We attempted prednisone therapy, but the gastritis was too severe to continue the treatment... because of 2007 gastric bypass surgery, the prednisone was affecting the bypassed stomach, as well as the active pouch.
My platelet count has not dipped below 55,000... but the coagulation problem, complicated by evidence of mini-strokes and ischemic disease in the brain demanded immediate attention. Because I am treated by the Indiana University medical faculty and have been diagnosed with two other multi-system auto-immune disorders, I was originally assigned to the hematologist who specializes in immunology. After the ischemic disease was diagnosed, he reviewed my entire chart and asked me to agree to see the faculty member who specializes in coagulation.
Given the option of Rituxan infusion therapy or splenectomy, I decided to try rituximab chemotherapy, first. I have completed 3 out of 4 infusions. So far, I see no improvement in CBC numbers. The platelet county at treatment #1 was 72... at treatment #2 was 78... at treatment #3 was 64.
I am on short-term disability leave from work. The Rituxan chemotherapy has left me wiped out. My blood pressure drops as low as 82/52 during the infusion... my pulse drops as low as 54. The coagulation prof said that it could take 6-8 weeks before he'll know if the Rituxan has been effective. If not successful, then splenectomy will be the only other option.
If anyone else on this page has had splenectomy, I'd like to hear from you!
Hi my name is Ann... I was diagnosed on (9/11/09). I had ACL donor and ham string graft on 8/14/09 and had been on motrin and aspririn for 3 weeks. I started a menstrual cycle and bleed heavy.. heavy for 8-9 days. I had bruised to the backs of my legs, but had been going to physical therapy to recover from acl surgery. Went to OB MD and he order labs. platelet were 15,000. I was transferred to a larger hospital in my area to see a hematologist and by the time i got there my platelets were done to 12,000. I received prednisone, platelets and 2 units of blood (hemaglobin 7.4)
by 9/11/09 my platelets were up to 38,000, 9/12/09- 65,0000 and on 9/13/09 I came home with platelets up to 96,000 and was taking prednisone 50mg am/50mg pm.
I went for labs on 9/17 and platelets were up to 154,000 so I rejoiced and was thankful the horrible prednisone was helping and the md decreased prednisone to 50mg am and 40mg pm. I went 10/1/09 for repeat labs and they were down to 57,000..i have started another menstrual cycle , but bleeding small... i hope that is why..the upped my prednisone to 50mg am/50mg pm. I go for repeat labs on 10/5/09. I have been reading, internet searching and looking for help/answers/info..
Learning about foods to avoid- blueberries, tomatoes, garlic.... some of my favorites... sorry so winded,,, thanks for allowing...
I was diagnosed August 23, the day after my birthday. I had bruising and heavy bleeding for a couple months before I went to the hospital, but I kept putting off symptoms. I went in to the ER and my platelet count was at 8000. I had a couple treatments of IVIG and that seemed to help a lot. I'm just starting to learn things and figuring out how to deal with this.
Updated: The cause has raised $100.
i was dignosed June 08 was very quick. I noticed the bruising and whent to get checked out. Was on 80 mg Pred. did IVIG a couple of times , I did a bone marrow biopsy but nothing brought my numbers up. I went to see the General Surgeon and he scheduled me for surgery the next morning to remove my spleen. I did need a blood transfusionand platelets after surgery. it took about a month or two and I still had to get more platelets but when my numbers started going up they have not dropped. Last count was in June 09 at 436,000. Praise God. Before Surgery my numbers stayed 35000 or lower 9000 at lowest
i was just diagnosed on august 8th after having a rare and heavy menstural cycle that i have never had before. i was also shaking and fever . i was then told i had itp and was giving predisone. just being on the 60mg of that alone my count just kept dropping every week. on august 14th my count was at 6,000 so i had to be admitted that night and was put on ivig and in one treatment it rose it to 47,000 and then i had to get another treatment the next day and it rose it again to 116,000 so i was able to go home after that treatment and i have to go back to doctor for count on thursday to see if the treatments worked and hopefully stick. im am currently taking 80mg of predisone daily. so hopefully everything is going to be fine bc they said if my counts drop again they said they will take my spleen the doctor said he didn't want to have to put me through the other treatments bc im so young. so im not quite sure on what to think of all this bc this happened so quick and out of the blue. so im still in the early stages of this. im not quite sure if there is anything else for me to do as far as my diet goes or if i could do some excercises that would help. so if anybody has any insite for me im open for everything you can share with me!!! i want to know as much as i can about what is going on with me! so feel free to message me!!!
My 2 year old was diagnosed when she went in for her regular shots- she had bruises but she always plays hard- so I mentioned it. The doc took a blood sample and called after midnight to tell us to get to the hospital. She has had treatment 4 times since Christmas and gets checked weekly. She thinks it is fun b/c the office has a playroom. We have to look at it from her perspective a bit and trust that she is in God's hands.
PDSA ITP Conference this weekend in Orlando Florida yeah!!! Cant wait to see everyone and meet new people as well! Hope to see you there!!!
XoXO
Gen :0)
as most of you may know i was diagnosed with ITP since 1998 i've been in remission for 10year i have relaps and have needed 2 treatment since 'nov 09 i may need another treatment on Thursaday 2/11/10. please help the cause for a cure thank you