Don't mean to be a downer

[Slater]

A friend of mine (Rob, he's gone with me a few times if any one rembers him), his wife who was pregnant; she came down with a rare desiese CDI Commen defiecency Immunesyndrome. In the last two months she has been in the hospital in ICU for at least 8 weeks had open heart and lung surgrey lost a baby, been told she needs a historectomy (she is still out from the heart sergury) andd that she may become a hemofielack. Rob has a job where he travels for work, he's a wreck and has no clue what to do.

Hodgkins Lymphoma is a side efect of this CDI.

If anyone knows any good source of GOOD information about this it would be appreacieated. And are there any charity studys that are for this Rare desiese (ironic that its called commen)

[Cards]

Hey Slater,

Sorry to hear this about your friends. A good place to start would be with the IDF (Immune Deficiency Foundation) www.primaryimmune.org or the Jeffrey Modell Foundation www.jmfworld.com. Or, just Google on Primary Immune Deficiency, you will find these and other resources. There are a number of different conditions involving immune deficiency. The IDF and JMF are very patient/family-focused organizations and would be excellent resources to start with. I think the condition you are referring to is actually CVID, which is Common Variable Immune Deficiency. The one suggestion I would offer is that they seek out a good immunologist for her care. I don?t want to get into their business, but I can put them in touch with someone who could provide physician names who are key treaters of patients with CVID here in the Chicago area or probably other parts of the country if they are not local. You definitely want an experienced immunologist on your team.

One of the key plasma derived products that Baxter BioScience manufactures is intravenous immune globulins (IVIG), which is a key part of the treatment for immune deficient conditions. Not to sound like an advertisement, just want to let you know why I might sound like I know something. And that is about the extent of what I know, but again can I put them in touch with people who can help a great deal more than I.

Cards

[Slater]

Thanks I sent him the info. I was playing with the google serch and found too much info ( most of it was very general ) His wife docters seem to be good (she is at North Western in Chicago). It just seems that the docters tell him that she is getting better but she is still out with a breathing tube in.

[Cards]

I hope she is on a good path to recovery. The most critical part of these kind of illnesses (as with most) seems to be getting the right diagnosis early on and then getting the right doc to manage the disease and treatment.

Best of luck to them both and let me know if they want any other info. The guy sitting in the office next to me is a fountain of information on this disease. I know he said there is an excellent doc at Rush and one out in the western burbs. I will ask him about the docs at N'western and pass along the names.