Goodpastures Syndrome

WaterWytch · June 27

Hi all

New here and was wondering if anyone else here had a diagnosis of of Goodpastures Syndrome? I was diagnosed a few months ago after being ill and ending up in a coma in hospital. I know very little about the syndrome and neither do the consultants I am under currently ( respiratory, neurology, hematology) Apparently it's a 1 in 1 million autoimmune syndrome which I didn't know I carried the gene for and I got incredibly lucky in the hospital due to one of the doctors seeing a case of it 15 years ago. It meant that I got the right treatment early enough to not end up losing my kidney function etc.

If anyone has any info it would be appreciated as I don't know what to expect going forward. Any more info I can provide, please let me know.

Thanks for reading

Albus_Scope · June 27

Well hi there @WaterWytch (loving the name) and welcome to the community. 😁

I'm afraid Goodpastures syndrome is not something I've heard of before, so I'm afraid I cant be of any help. But I'm hoping the community may has some smart folk who can provide more information for you. 😊

WaterWytch · June 27

Thanks for the welcome @Albus_Scope

Not many people have heard of it. I hadn't and it's obviously been around in my family tree as it is genetic.

Doris_Scope · June 27

Hi @WaterWytch

Welcome to the community. I am sorry to hear that you have been so ill.

I also was unaware of Goodpasture Syndrome but did a little searching for you.

You may be aware that it is called Anti-glomerular basement membrane disease. There doesn’t seem to be a lot written about it but it does come up on several rare syndrome sites.

https://rarediseases.info.nih.gov/diseases/2551/anti-glomerular-basement-membrane-disease

You can also type the full name into the https://globalgenes.org/ website. There is a section that then asks if you are newly diagnosed with this. You can then get in touch with them. They might be able to give you more information.

I hope this helps in some way.