Immune Deficiency Foundation

9 recommendations and reviews from 7 people

• Referral from April 28, 2015
  

  Amanda C. asked:

  Recommendations for a really good ENT - anywhere around Birmingham. I've had sinus surgery twice and I still have sinus/ear infections every single month! Any suggestions would be greatly appreciated!!

  

  Sherri W. replied:

  Maybe you should see an immunologist. www.primaryimmune.org

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• Referral from September 12, 2014
  

  Christel K. asked:

  Is there a list of Drs around the country specializing in XLA Agammaglobulinemia? Looking for a Dr and specifically on what to test. We've had two drs say our son fits the profile but they don't know how to test for it.

  

  American I. replied:

  Hello, We have information on our website here about this condition. http://www.aaaai.org/conditions-and-treatments/primary-immunodeficiency-disease/x-linked-agammaglobulinemia.aspx All of our allergists/immunologists should be able to help you. We have a directory where you can find one in your area. http://aaaai.execinc.com/edibo/FindAnAllergist Another resource that may be helpful is one of our lay organizations. Their website is here. http://primaryimmune.org/. Let us know if you have additional questions.

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• Referral from April 20, 2014
  

  Bobbie N. asked:

  Thank you for allowing me to join this group. I was diagnosed with CVID in July of 2013. I go weekly for infusions, however my insurance company stopped that, and wants me to go once monthly. My body can barely tolerate once weekly and my doctor is battling with the insurance co. I have missed three infusions and I feel sick, Asthma is flaring up and now on meds for that. Any suggestions?

  

  Chelsee S. replied:

  Get in touch with the Immune Deficiency Foundation. They have insurance experts that can assist.http://primaryimmune.org

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• Referral from January 8, 2014
  

  Sara C. asked:

  My insurance changed January 1st and as of right now they are denying my hizentra subq infusions even after my Dr tried do a preauthorization. I can't afford to pay without insurance. Does anyone know a way I can get help? My previous insurance always covered it so it's never been an issue.

  

  Jennifer K. replied:

  Here are 2 contacts that may be able to provide you advise/ help. www.primaryimmune.org and www.thejenniferjaffcenter.org/advocacy/.

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• Referral from November 17, 2012
  

  Feeding A. asked:

  Can anyone recommend a good Peds Allergist in the Omaha, NE area?

  

  Barb B. replied:

  Contact the Immune Deficiency Foundation. www.primaryimmune.org or 1-800-296-4433.

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Recommendations from Immune F.

• Referral from February 5, 2016
  

  Stirling L. asked:

  Does anyone else here have a sub-class deficiency? IgG2 specifically, but any help is appreciated? PS: my levels from December which were already low to begin with for a certain immunoglobulin is now half of what it used to be? Anyone have this happen to them?

  

  Immune F. replied:

  Hi Stirling - Thank you so much for your post. We recommend reaching out to us via Ask IDF: https://primaryimmune.org/services/ask-idf/ where we can give you the best information for your questions. Please contact us at the link above or give us a call at 800-296-4433. Thank you.

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• Referral from October 13, 2015
  

  Susan S. asked:

  Outside of Birmingham in Alabama where is the next immunologist that IDF can recommend should I want a second opinion?

  

  Immune F. replied:

  Hi Susan - Thank you for reaching out to us! For us to best serve your needs please contact us via Ask IDF https://primaryimmune.org/services/ask-idf/ or give us a call at 800-296-4433. Thank you!

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Recommendations from Mark L.

• Referral from January 18, 2013
  

  Tami B. asked:

  Do any of y'all live in TX and have any suggestions for immunologist? I'm having problems with my insurance and doctors and am over a week late on my infusion... none of them seem to want to help and I just may need to find a whole new system for my cvid treatment or die.... idk which is a better option at this point....

  

  Mark L. replied:

  Have you called the IDF for a referral? (800) 296-4433

  

  Mark L. replied:

  The Immune Deficiency Foundation; a non profit whose only purpose is to support / educate / lobby for patients with primary immune diseases . .their website is down at the moment but primaryimmune.org. Laura's right, the best in Texas is Jordan Orange at Texas Children's . .I'm sure he can make a recommendation. Please tell him I say hello.

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