Budd charri syndrome

[Boots_]

I have recently been diagnosed with budd charri syndrome finding it hard to find doctors that even know about this.

[alfredthegreat]

Hi Boots and welcome to the forum. I hadn't heard of it and just had to look it up and I have read that it is a very rare syndrome, Hopefully someone on the forum may be familiar with the problem and be able to speak to you before long. Regards Alf

[Hidden]

Hello Boots. I've just found this available on the BLT website: britishlivertrust.org.uk/li...

There are a few similar cases like your and you might be interested in having a read at Debbie's story: britishlivertrust.org.uk/st...

I hope these are of some help to you.

[Hidden]

I have Budd Chiari. Happy to answer any questions as best I can about my experiences. It is quite rare. The BLT information was useful and the hospital actually printed off the Wikipedia entry for me to read.

I’m still here 12 years later and in relatively good health albeit with a damaged liver. Get them to test you for jak2 gene mutation and refer you to a haemotologist to find out why your blood clotted in the first place.

Hope you get some of the answers you need. Just keep asking them.

Julie

[G2018]

Hi. I’ve also got Budd-Chiari, happy to try and answer any questions you have.