Support for Canadians WIth Itp

Hi Everyone,

I am a Canadian who has been battling ITP for almost 10 years now. Despite seeing many haematologists and doctors it seems like their is not much support as far as ITP goes here in Canada in some ways. I have been off and on prednisone for the last year. I have been working in childcare but had to quit that job due to the stressful environment affecting my platelets and constantly getting sick. Does anyone know if Canada provides disability or some sort of benefits for those dealing with chronic ITP? What support programs are their in Ontario?

We have several Canadian members who could probably help you. From what I've seen, getting disability in Canada is much easier than getting it here in the US. It's almost impossible to get it here.

Hi, Nicolette, welcome! I'm a Canadian from NB. I've had ITP since 2004. I've tried everything available to me here; IVIG, Pred., splenectomy and finally Rituxan. I am on long term disability. My doctor at the time filled in some paper work and so did I. I waited about 6 months to be approved, but was on the first try.

What treatments have you tried other than the pred? What are your counts like?

There's a few of us on here; a couple from Ontario. Maybe some of the others will chime in too.

Hi i'm from Ontario too.

My doctor said in order to get a disability you had have a splenectomy that did not work. That said I it depends on what your doctor is willing to do. I find it is a matter of how much paperwork a doctor is willing to do.

As for programs sorry I do not know of any but that doesn't mean they may not exist! That said try contacting McMaster hospital in Hamilton Ontario they have a floor dedicated to blood disorders (ok mainly leukemia) but maybe someone there might have info.

I am from Calgary and have had ITP for over 35 years. Ay first I had a spleenectomy (only thing at the time) Doctors had very little knowledge of the disorder. I was on prednisone after that and was in remission for many years. Since it has returned I have had Rituxin, and am now on Nplate (which for me is working really well.)
As for support groups I have not found any But have found this board is a wonderful resource and support group.
I was on disability for 10 yrs - Now I am a senior I do not have disability any more (it's a joke in my family becoming a senior means I no longer have the disorder!!!!) My doctor filled out and submitted the forms. I was on it at the first try and just had to fill in a form yearly for the continuation.
I hope this helps and welcome to the board. Christine

Christine, you had to fill in forms yearly to stay on the disability? I just get a phone call every once in a while. Were you allowed to work at all while you were on it? I can make $5ooo before I have to claim it. I guess different Provinces have different ways of doing things!

Yes I had to fill out a form and yes I could have worked but I had a good pension from my job and was near retirement age anyway. I was fortunate in that I could do some volunteer work and do things I had not been able to while working. They were satisfied in the fact I was doing so many hours of the volunteer work. I guess it's called work but unpaid! with doing volunteer work I could choose my cause and not have to go through the everyday stress my paid job.