Thrombocytopenic Purpura Support Group

Not sure if I am allowed to be here. Don't know where else to go. My lovely partner died from TTP 3 months ago and am struggling to take it in still. We have a 7 year old and our new baby was only 6 months old when he died.

It was a total shock. He was only 31. Was fine one min and then had a stroke, rushed to hospital and 10 days later was dead. the plasma exchange worked at first and went from 17 to 69 but then stopped working and dropped to 7 before he went into cardio arrest and died.

I am sorry if I am not supposed to post here but just don't know what to do any more as no one understands TTP as it is so rare. I am terrified daily that our children will get it.

Hello,

Of course you are welcome here as far as I am concerned! TTP is a horrible fast hitting thing that not many have heard of --even in the medical field! I had TTP/HUS and I am just grateful I can say it is in

my rearview mirror now! I do worry about relapse but so far so good! I don't think TTP can be passed on to your kids but I am not an expert on the subject---I have not heard any news on this happening???? Could you ask the doctor or voice your concerns to a medical person?

I am sending you thoughts of peace and healing! Take care of yourself and know that others feel your pain!

In the spirit, Judy

Hi there and welcome! So very sorry to hear of your loss. I'm in remission myself but did ask about passing on this disease if I had a child. My doc had only heard of it being passed on if the patient's TTP was heritary, which mine is not to my knowledge.

I hope joining this group brings you peace and maybe some comfort in talking about it.

God Bless! Ana Maria

Hi Guys, My Mother in law has TTP & was lucky enough to pull through.

She was told that she got this disease from a tablet she was taking for her back pain, this drug has now been taken off the market and is looking at legal advice, she has asked me to find other people that have suffered from TTP or people that have been affected by it.

Was wondering if anyone else had looked into legal advice?????

Your help would be appreciated

Hi Amz87. Although my TTP was idiopathic there's no link that it was drug induced. Glad your Mom is okay. -Ana Maria