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15 years 1 month ago #7781 by HPRACING25
Questions was created by HPRACING25
OK, my name is Kristy, and I got ITP in 1983 when I was two. They thought I had lukemia at first, but bone marrow biopsy came back negative. Fun to do on a two and a half year old who is now 29, and still remembers the pain. LOL. So, had lots of treatments. most I don't remember, nothing worked, so in 1986 at the age of five they took out my spleen. The doctors told my mom I was cured when my counts returned to normal, and stayed there. I am now 29, almost 30, and so far nothing has come back. I have a very good Family Nurse Practitioner who I see on a regular basis. She checks my CBC every six months. My questions are first off, am I right to understand I am not truly "cured" as the doctors told my mother? Second, I have a three year old daughter, is there a chance I could have passed this on to her? Last, I have been getting some bruising on my legs, and can't remember doing anything to cause them, but my FNP just checked my CBC two weeks ago, and said everything looked fine, should I ask her for a referal to a blood doctor? (Don't know what they are called)
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15 years 1 month ago #7796 by eklein
Replied by eklein on topic Re: Questions
Kristy, if your platelet count is still in the normal range, I don't see any reason for you to consult a hematologist.

And while it's true there is no cure, sometimes a remission can last as long as a person does, you might live to a ripe old age and never have a relapse. That's why getting blood tests now and then and watching for symptoms is smart.

There is sometimes a hereditary component to ITP so she could possibly have a greater chance of having it. Let her ped know and watch for symptoms, but probably she'll be fine.

Your story will give a lot of hope to parents who are considering splenectomy for their kids!
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 1 month ago #7809 by Sandi
Replied by Sandi on topic Re: Questions
Kristy:

I pretty much agree with Erica. I wouldn't ever say anyone with an ITP history is cured - relapses can always happen.

As for your children, chances are very slim that they will ever develop ITP. It's not usually hereditary, but the predisposition to autoimmune disorders is, so anything is possible. My sister and I have both had ITP, and between us, we have four children (ages 21 to 27). None of our children have developed ITP, but my one daughter developed Graves Disease. BTW - I also have Lupus.