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ITP Support Association
3,149 members1,568 posts

Lack of knowledge

There is so much information on this site regarding thrombocytophenia. Can someone please try and explain to me why the social services and many other people in the medical profession does not know enough. There is also Osteogenesis Imperfecta. Families have been broken up, false accusations, parents imprisoned.

It is only when people stand up and speak out. Someone needs to take notice and put a stop to all of the heartbreak.

Stand up and speak out.

4 Replies

So true. When I was first diagnosed as a child (over 29 yrs ago) the fist thought for people was my mom was abusing me. Not the case. I ended up have ITP well into my 20's before going into remission until this August. I am currently in the hospital as I type from a bloody nose that lasted wouldn't stop past an hour and a half and I ended up passing out. Platelets when I got to ER were at 6. Just this Sunday they were 59. But the medical team from 911 that had to work on me knew nothing of what I had. Didn't even focus on it just that my blood pressure was low. They had no idea the severity of it and that is crazy to me.


Have you checked out the Surgeon General's report on Osteogenesis Imperfecta? Well worth downloading info. Also look on OI Canada, OI New Zealand.

I have had several people in my classes with OI. I was stunned when I found out some teachers never heard of it.

Look on site Parents against Injustice.

Do you carry a card with you?

Put down your medical condition and all the meds you take in your purse or a small wallet.

The more people who know about this, the better. It will help to protect so many, including all in the medical profession, police and social workers.

Stand tall, shout louder.

My best wishes to you and all.



There is a person who uses the name of VIKAS and he claims to have a homeopathic doctor who has a cure for ITP. I have exchanged at least 50+ private messages with him through Whatsapp. EVERYTHING is TOP SECRET. Including the name of the medicines, the doctors name, address and phone number. The only way to get the meds is through this person Vikas. When I pushed a little bit to get the doctors name, this person told me to find another doctor!!! I think it's a really big scam! It seems that the majority of the people who post on this site want to share and we all try to help each other. Not so with this person. Thanks for reading this alert.


It has somewhat to do with when studying platelets, they are centrifuged and only available for approx 3 days. However, it is extremely hard to study them especially under microscope, as it is a molecule designed to clot, it immediately branches out and cannot be studied how it interacts with other medicines. Extremely frustrating, but they need mechanisms to study platelets in flow.


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