April is PIDD Awareness Month

 

April is Primary Immunodeficiency Awareness Month. Primary Immune Deficiency Diseases (PIDDs) are a group of relatively rare conditions caused by intrinsic or genetic defects in the immune system. The most famous case is “The Boy in the Bubble” story.  In the US, there are an estimated 250,000 patients diagnosed with PIDD and thousands more go undiagnosed.  These diseases can affect anyone, regardless of age or sex. Patients with PIDD are more susceptible to infections and health problems that lead to serious and debilitating diseases.  There are more than 150 different PIDDs.

PIDD involves infections that are: 1) severe requiring hospitalization or IV antibiotics, 2) persistent and don’t clear easily, 3) unusual and caused by uncommon organisms, 4) recurrent, and 5) could possibly run in families. If you’d like further information, please contact the Immune Deficiency Foundation at www.primaryimmune.org.

Written by staff writer, Kelly Clardy

©2024butyoudontlooksick.com
  • Betbuzzy

    I found out this year that I have PIDD. It was only a blood test that the immunologist suggested because my son was going to have some blood work as well and dr wanted to check my immunity levels. My son was constantly ill when he was a young child and we thought after his tonsillectomy at 7, he would be fine. He got much better after it but he began getting sick over and over since last Summer. I took him to his allergist/immunologist and mentioned the frequent infections that tests were done and we got an answer. My son has IgG deficiency. We are new to this but I noticed that my son is tired a lot, he missed school last week and part of this week, the sinus infection is still present and we changed meds. He got some vaccines to help him and we are taking it a day at a time. He’s 16 and I hate to see him sick. I have SLE and Sjogren’s, i hope he doesn’t end up with any autoimmune. We will raise awareness, we are willing to do a video because we could have avoided all the ER visits and hospitalizations with proper diagnosis. It’s traumatic for a young child. He ended up in ER last summer and after months of getting sick on and off, at least we know it is PIDD, he will get the right treatment and he will lead a normal life. 

  • Debbie

    I am so glad to have found some information! This is so new (and yet so old) to me. The last few years have been such a whirlwind and my head is still spinning! I suffer from PIDD and they are still not too sure about some type of autoimmune disorder as well. Whatever it is I have trouble with allergies, that turn quickly into serious sinus infections, bronchitis, pneumonia. I also was diagnosed a little over a year ago with Intermediate uveitis in both eyes. Basically inflammation comes from “somewhere” in either one or in the case of this last “flare” in both eyes giving me lots of floaters, blurry spots and makes it hard as heck to see. The inflammation affects the middle and back of the eyes so they have to give me injections in the eyes of kenelog (because oral steroids and drops don’t work). Now because of this last bad flare my 2 docs decided to start me on IVIG. Had my 1st infusion in April and scheduled for 2nd next week. 75 grams. Heard thats a large dose. In February I also had some problem with a breast swelling, turning red then purple etc. Did 3 rounds of antibiotics, tests for breast cancer, biopsy etc and nothing showed up except “blood cells in the tissue”. no diagnosis. Just watch to see what happens. “Could be related to immune system problems” they say. Anyway, Would love to hear from anyone that has had weird stuff show up then “disappear”. I’m still nervous about the breast issue but what do you do when the symptoms go away? I hope the IVIG helps the eyes and other stuff cause I really don’t want to lose my vision and would love to feel better. WHat really sucks is I work as a Pre K Teacher which means I’m around little germ carriers all the time but can’t leave my job because I can’t lose my insurance. Thanks for listening!

  • Mark in Cleveland,
    That is not correct. Prednisone suppresses your immune system and REDUCES antibody counts. Everyone, including doctors at the Mayo Clinic, were blaming my low IgG levels on Prednisone. Finally a hematologist believed they were too low to be purely the result of high-dose Prednisone and began treating me as if I had CVID with IVIG treatments. I completely turned around, got off the Prednisone and had additional testing confirming my low levels were not due to Prednisone.

  • Sari

    Does anyone here have problems with their IgA levels? I was tested years ago, and while my IgG level is lower than normal, it’s my IgA level that threw my doctors into a tailspin and leaves me susceptible to illness whenever someone across the street sneezes.

  • markincleveland

    Michelle, your prednisone should have no effect on the Immune globulin test. One of the key elements of Primary Immune Disease is a reduced IgG level, at least 2 standard deviations from the norm. Although steroids effect a lot of things in the body IG levels is not one of them.
    Good luck

  • Celia Brent

    Thnk you so much for giving PIDD some awareness. While there are 250,000 suspected cases of PIDD, there are only about 6,100 of us in the country on IgG infusions so that we can go out into public without catching whatever little germ might be waiting around the corner.
    I really related to your expression of the anxiety involved in having a chronic illness. For me, I have easily gone from fine to being in the hospital from an infection.
    Sure, most people don’t really know what tomorrow holds, but, for those of us with immune deficiency, just going to the grocery can present a danger.
    Then there is the constant issue of other diagnoses that usually come along with it, such as auto-immune diseases.
    Your expression of what it is like to live this way is phenomenal, and I thank you for your words of understanding, and for helping others to understand.

  • Nan J.

    @Michelle, I wasn’t diagnosed until 2004, age 58. I had many respiratory infections my whole life, aquiring chronic bronchitis & asthma at age 30 (1976.) I finally had the workup, which is initial blood tests for Immune globulin levels, followed by challenges with various vaccines & 30 days later checking for antibodies. Not painful–just have to find an immunologist knowledgeable in the diseases. After fighting with my insurance company for a few months, I began IVIG treatments in Dec. 04. I’m finally having less infections, although when I get them they have become much worse. So please, keep pushing for diagnosis. Also have your level of alpha one anti-trypsin checked; free testing–google online; MUSC does it, as well as one in Florida. It’s by mail, you don’t have to go there. Have you been checked for your Ige level? Xolair has also helped me. Good luck.

  • Michelle

    thank you!!! my docs are convinced that i have on of these numerous immune deficiencies but b/c i am prednisone dependent but i can tell you that right now, due to my chronic severe asthma and all the infections i suffer from being so vulnerable, i am the “mama in the bubble”…..