Big hugs Bending Reality I truly get the hideous grief at a possible answer too late for your little Niece. I am so sorry...

As for me though - no no name. No diagnosis... I was told it was bad luck, one of thsoe things... It wasn't until I alone... Just me! Researched, studied and self diagnosed - then I found someone who had a similar ethos who just happened to be an obstetrician with a special interest in immunity... Who I found had written papers on NK cells & it fitted my profile...

As I have been told I have an "antiphospholipd like syndrome".... Because my blood doesn't test positive but my body has acted that way in that it's kills my babies... It clots my blood and causes my heart o arrest!

Every single Dr at the hospital I birthed Imogen in thought it was ludicrous that I had an autoimmune condition that caused my losses... Until I got "better" when given steroids before Imogen's birth... They were shocked, puzzled a& delayed the c/section - as nobody gets better from eclampsia... Nor is it usual to develop Eclampsia so suddenly, or in a fifth pregnancy with no previous symptoms of this & with the same partner. Except when they have no longer got an attatched placenta! Then when the steroids wore off... I got worse. Then more steroids and my liver started to bleed less etc etc etc... Then after her birth I had a cardiac arrest...

It was then decided that I had an "antiphopholipid like syndrome"of which there is no test for - but one day there will be". "One day there will be a name for what you have"... I had multi system failure caused by coagulation caused by what appears to be an autoimmune response"...

So, no name. Just "feelings & ideas"... That can't be proven.

Not everything can be proven right now it takes time. Remember Lupus is a disease only diagnoseable by blood test for 25 years! Lots of people had it before then but there was no name so therefore no disease existed in text...

Imogen has a rare chromosomal abnormality of which only 5 children have been written up as having it in the world. 10 years ago it was undetectable due to there not being sufficient technology available to pick up chromosome microdeletions!

We have to be balanced. To only turn to medical journals & only turn to colloquial evidence is dangerous. We need to use both. Hold one in each hand and weigh them, feel them and see the bridge between them grow... That I believe is the way forward in science.

Science does not explain a lot of what happens in our World - Heresay does not explain it either. We are fools to not use both - I think...