Bloody ITP

Michelle,

Haha! My family agrees with you. My husband says that I am a sad git for the amount of time I spend on the internet, and my sons are always telling me that I should say fella or guy rather than bloke. But that is because the poor deprived lads were brought up in northern England rather than beautiful Hampshire like me!!!!

Ali

P.S. I've got a friend who constantly takes the mick out of the way I speak because people from Portsmouth like me don't generally pronouce the letter "t" if it is in the middle of a word - she reckons I take Dougie to the "hospiddle" and spread "budder" on my toast (sorry - I can't do justice to either my accent or hers in writing!).

Michelle,

Haha! My family agrees with you. My husband says that I am a sad git for the amount of time I spend on the internet, and my sons are always telling me that I should say fella or guy rather than bloke. But that is because the poor deprived lads were brought up in northern England rather than beautiful Hampshire like me!!!!

Ali

P.S. I've got a friend who constantly takes the mick out of the way I speak because people from Portsmouth like me don't generally pronouce the letter "t" if it is in the middle of a word - she reckons I take Dougie to the "hospiddle" and spread "budder" on my toast (sorry - I can't do justice to either my accent or hers in writing!).

Ali,

Yeah, the medical care in Britain has a great reputation for quality care...no doubt. You know what else I was thinking...Roger and Dougie remind me of how my son's paternal grandma and aunt both have Chronic ITP. Its not supposed to be genetic, right? But it seems that Roger has some similar issues to Dougie, maybe not as bad, though. I think that there are undiscovered syndromes or genetic predispositions that are being missed. If they would do a study of siblings or directly related family members with ITP they might find a better way to treat these kids. Just a thought. I think its the same with my son with Multiple Sclerosis. Its largely thought to be an autoimmune disease, but I think that often the reason cures and treatments are not found or are not effective is that they aren't looking in the right "place" or etiology of the disease. It might look like autoimmune, but what if there is something else that is causing some of these diseases to look like they are autoimmune. Researchers often get tunnel vision when it comes to these diseases and I think if they could look outside the tunnel or box they might find a cure or better treatment. That's my hypothesis :silly:

They are doing reasearch into familial thrombocytopenia which strictly speaking isn't ITP. The doctor doing the research mentioned it on the UK ITP forum. I don't know if it's still him doing the research but there are people with an interest in finding answers out there.

It seems that familial thrombocytopenia often gets wrongly diagnosed as ITP which is a bad thing as the usual ITP treatments then don't work.

If it turns out that it is a familial thing Ali, then it would be worth speaking to the people who run the ITP registries, child and adult registries are run separately, to get their opinions. You may get more info on this from the adult registry guys than the child registry I'd have thought.

That definitely fits Tim and his Grandma. They are both chronic refractory. His aunt is chronic but maintains decent counts. I've never heard of familial thrombocytopenia, though.

As I say, I don't know if Momin is still doing this research but an email might find out. I do know that the nurse, Deborah no longer works there so don't bother using her address.

www.ukitpregistry.com/phpBB2/viewtopic.php?t=130&sid=e3f69e4ef0958b73980fe42f2d778528

If no response an email to Drew Provan would find out what is ongoing.

Hey Ali - maybe you would fit in better in Canada or the US, because we also pronounce t's like d's in a lot of words.

I never really thought of all the different ways to say things - an english accent to me is just that "an english accent". However, now that I think about it, we also have many different ways of speaking on this side of the globe. The southern states talk very different as opposed to New Yorker's, or people from Newfoundland. I remember being in California once, and was talking to a lady while swimming in the ocean. When she found out that we were from Canada, she said "wow, you talk just like us".

Ali - I just have to ask this:

when I read your kid's names on the bottom of your posts, I am wondering - is Lol short for something (besides laugh out loud, which comes to my mind?) I have never heard that name before!?!

Ann and Donna - hope it doesn't turn out to be a familial thing for us, but it certainly seems to be for your family Donna

Michelle - Dougie is short for Douglas, Lol is short for Laurence. I've met a fair few middle aged and older men called Lol, and we occasionally meet other boys who shorten it to Laurie,. but its not a very common name now. He loves the name Lol, but hates being called Laurence. His friends also seem to think it is pretty cool because it is text language.

Al i

i have itp for 12 years with counts around 2-10 i have some nosebleeds sometimes but most of it comes from my gums and its always when i wake up because ive been lying down for so long. Try getting him to sleep with like 3 pillows so his head it elevated and get a humidifier so its not so dry in the air. It should help or at least slow it down alot hope it works for him