Current research & presentations: for patients and healthcare providers

[Joy Lewis O'Brien]

Hello all,

I'd like to create a place where current research articles can be posted and sorted by topic. If you encounter a published study or new research article, please feel free to post the article or link in this forum. If you need help, you can certainly send those to me and I will be happy to post the article or link for you. (You can send them to me directly through this site by using the email function at the top right of your home page.)

Additionally, I will read through the article and tag them with relevant tags to make them easy to search (i.e. Soliris, MCP mutation, Factor H, clinical trial, etc.) This way you can search by the tag for an article that's relevant to your situation to share with your doctor.

I am a grad student so my time tends to go in waves of work and waiting, so if you don't hear from me immediately, give me a couple of days!

Thanks to all and I hope this is useful!
--Joy

[Joy Lewis O'Brien]

This is the first published article about the connection between H1N1 and aHUS. It was believed to have triggered several new cases of aHUS. Also notable is the line that only about 50% of the carriers with a genotype predisposition for aHUS become symptomatic.

 

Keywords: Trigger

[Cheryl Biermann]

Great info!

[Joy Lewis O'Brien]

Multi organ involvement:

Linda got a stack of articles about multi organ involvement. I'll post them one at a time here to make them easier to search. Also, I'll try to put together a chart that lists the different organs involved with the article information attached, so you can easily see both the frequency and commonality of the different organ involvement as well as find the information behind the published research. I'm not sure yet how I can post this and keep it updated, so I'll keep working on that.

 

This first article is about use of eculizumab in a newborn (28 day old not responding to plasma infusions, and plasma replacement therapy failure due to small size). Other organs involved: bowel perforation, skin necrosis. No neurological involvement detected.

 

[Joy Lewis O'Brien]

This article is about a young adult with a Factor H deficiency (CFH) and renal graft failure. Trigger appears to be cocaine use. He was treated with apparent success with eculizumab despite renal insufficiency and dialysis dependency.