Common Variable Immunodeficiency Support Group

Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.

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Marilyn-Doss-Wright 02/11/2011

We may be traveling to Bangalore India or Taipei Taiwan. There is a good chance my husband my be asked to work in one of those regions for 2-3 years. I have concerns about my treatment and exposure to new diseases. I have looked at the CDC website and will talk with the travel group in my doctors practice. Any idea of how to find a doctor in one of these countries who has a clue about CVID? The assignment would not happen for at least 8 months so I have time to do research.

Any advice at all would be greatly appreciated.

markincleveland 02/11/2011

Indian Patients Society for Primary Immunodeficiency
(IPSPI) Plot No. 3, Phase 1, Adarsh Vihar, Patia, C.S. Pur,
Dist. Khurda, Bhubaneswar 751031 (Orissa)
Tel/Fax: 0674-2726402 (O)
+91 98611 85656 (M)
+91 94370 47888
+91 90404 07188 (M)
rubbychawla@ipspiindia.org
rubbyipspi@rediffmail.com
www.ipspiindia.org

From all I can tell, Taiwan does not appear to have an organization, although I might tey to google to published articles with authors who are in Taiwan or look at the Clinical immune Society and see if there are any member who live there.

Good luck. Both cites are great. I've spent a lot more time in Taiwan and loved it, but Bangalore is huge and ranks amount the great cities of the world.

kelli1b 02/11/2011

Maybe if you end up in Taiwan you could ask your current doc to consult with a new doc if needed there? As a last resort. Good luck, how exciting for you!

deleted_user 02/11/2011

best thing I can say is try your best to get your count as high as you can now because there is a good chance you might miss a few doses when you get there....you might need to find a doc here to consult with a doc there and have your meds shipped there and go to whatever hospital and get them I would even find out what doc you will be seeing out there as soon as you can its always better to be two steps ahead of everyone...lol

because as far as I know vaccines that work on normal ppl when they travel will not help us

deleted_user 02/12/2011

maybe sub q would work they could ship and you can do it
no clue not a fan of sub q but i would probably look into it if i traveled outside the US.

deleted_user 02/13/2011

Marilyn, may I ask ... what does your huband do?

Marilyn-Doss-Wright 02/13/2011

@ mark. Thanks for the information. I was worried you would tell me it would be insane to consider such a move. We are excited about the adventure.

@midge. MY dh is a computer engineer and his company is expanding in India and Taiwan and are needing experienced leaders help with communication between countries.

deleted_user 02/13/2011

Thanks Marilyn! My husband's job might require a move for us in the distant future as well ... but it would most likely be to a third world hell hole, which for me, would not be possible. I am eager to learn what you find out about India, as well as Taiwan. Would you mind posting what you find out?

markincleveland 02/13/2011

@Tink,
Shipping med internationally by individuals is generally not legal. The US government can detain any prescription shipped into the US. Think about Canadian meds . . . much cheaper . . . but confiscated by customs now and then as a deterrent.

I can't imagine a hospital giving an IV with illogically imported medication. .

markincleveland 02/13/2011

Mareilyn,
The thing to remember is India and Twain have sophisticated medical systems for the rich and particularly US nationals. Your husbands company will help you find first quality medical providers. The need to do so, to keep you husband and all their US employees happy.

markincleveland 02/13/2011

UPenn's nursing program offers a semester in Israel. That was one of the selling features of their program for my daughter, with CVID (she is fluent in Hebrew already), Israel's FDA, or whatever they call it, approved IViG as well as subQ before the US go around to it. There also is some heavy research coming from India, Israel, Twain, and particularly Europe
Marilyn, you might also look at an organization called, IPOPI. They are the international association of immune deficiency organizations. IDF is one of the founding organizations. Their website is IPOPI.org.

deleted_user 02/13/2011

I would think that IVIG is not available in some parts of the world ... and quite honestly would you feel comfortable with the pool of donors who might make up the IVIG in a third world hell hole??? Not me ... no thanks!!!

markincleveland 02/13/2011

Midge,
Why would you think that? Here is a link to the world's IViG products. I think there are at least 50 different countries listed, including India and Twain.
http://ipopi.org/documents/global-immunoglobulin-list/Ig%20Global%20list.htm

deleted_user 02/13/2011

I didn't see Angola, Ghana or Nigeria on the list ... these are the kinds of third world hell holes I speak of!

deleted_user 02/15/2011

yeah they do "ship" it over there and its not illegal it just coast more and it has to go threw the right ppl or you will never get your meds.....

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