Story of Hope for Parents of Children with ITP

I just wanted to share my story to give hope to others struggling with this awful disorder... especially the parents who have young children struggling. I was diagnosed around my 10 th birthday following many tests and some serious worry that I had leukaemia. My levels were extremely low, under 10, and I was always covered in bruises. This was 25 years ago and there weren't outlets like this to search for support, so my parents did the best they could with the information they got from our small town doctor.

They were given the treatment options.... steroids, spleen removal, and the side effects for both. Our doctor at the time recommended we just monitor me closely with weekly counts, as the side effects from most treatments were often much worse than the disease... so my parents did just that. My levels went up and down and dipped dangerously a few times but had leveled off to around 80 by the time I reached my 20's. ITPers know that 80 is a pretty good number. I stopped going for blood tests except at my yearly physical, or if I noticed extra bruising and this was how I carried on. When I was 29 and pregnant with my first son my levels dipped quite low again, which was scary because of impending labor but I was treated with ivig and was able to have a successful c-section with no complications. After giving birth my levels returned to the 80's and stayed there for the most part except for a few dips following miscarriages. I was nervous with my last pregnancy, however this time was different, my levels spiked to150-180!!! I've never had levels like this. I had a very positive natural childbirth this time around and my levels have stayed around 180 since my second sons birth. He is now 10 months old and my doctors believe that my pregnancy could have caused a remission. I'm not saying this is 100% the case but so far it seems to be, and I will post if anything changes. I'm also not advocating for no treatment, as I know that treatment is necessary and there are more options now and more access to information. I just wanted to share because I think there is hope that this disease can not be a life sentence, and at 35 years old my levels are the highest they've ever been.

- By Erin M.

 

 

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