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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kelli1b 02/11/2011

Hi everyone! I just started an ILD support group here on DS! It was time. I know there were several of us who have nodules and some type of ILD. I think we need to ban together. I have a friend on FB who has it and boy do our docs vary WIDELY on outlook and treatment, kinda like cvid! Here's the link:

http://www.dailystrength.org/groups/interstitial-lung-disease

PrincessButtercup 02/11/2011

I'll add that to the reference links group too. :)

kelli1b 02/11/2011

Good idea smartypants!

kelli1b 02/12/2011

We need more members lol there are only 2 :) any of you lung nodule people want to join? hehe

deleted_user 02/12/2011

thankfully i dont have to join that group yet!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
but i will if you need me to.

kelli1b 02/12/2011

Awww thank you Pcon you are so sweet! If you know anyone that has lung nodules or anything, maybe mention the support group. I thought we had more lung people on here lol Lungs present a whole new set of issues don't they?

deleted_user 02/12/2011

so far only asthma for me no nodules hopefully i will stick with the asthma ONLY!!!! LOL

deleted_user 02/16/2011

I guess I also need to join that group. I developed interstitial lung disease last march as a result of pneumonia and swine flu. I also have asthma. See you there.

deleted_user 02/17/2011

Kelli- I just joined this group do to the fact that my 8 Yr old has Bronchiectasis. Most of his problems are because of his lungs. Pulmozyme, Xopenex, Advair and The Vest. He also has developed Pulmonary Hypertension that requires him to use oxygen at night. All this because of his CVID. Thanks for starting the new group.

kelli1b 02/17/2011

Aw you are so welcome...its rare, I knew we needed a group :)

deleted_user 05/30/2012

Hi Kelli! I wanted to join as my sister has ILD. She was just diagnosed in March but has a VERY aggressive (or advanced) case of it. She is pretty much bedridden now and waiting for a double lung transplant at UCLA. She is on the top of their list for an O positive set of lungs so we are hopeful that it will happen soon. The team of Dr's there seem really great but the waiting is HARD. We are rotating caregiving between myself, my other sister, and her 27 year old daughter. 4 months ago I had never heard of ILD....so I am interested of the experiences particularly of anyone post transplant surgery. I think she may also be interested in being part of this group at some point. Thanks!!

kelli1b 05/30/2012

Hi there. I am so sorry to hear of what your family is going through. Here is a link to the group:

http://www.dailystrength.org/groups/interstitial-lung-disease

We are just a baby group but openly welcome more members. Everyone is good about sharing their personal stories and provide good support to one another.

carlsonamy 05/30/2012

Hi Kelli, I think that this fits me too although my immun. guy said that there is a whole bunch of stuff in my lungs that isn't supposed to be there, but he was very vague. My polmonologist diagnosed me with bronchiatsis but I don't know much more than that.

kelli1b 05/30/2012

Bronchectasis is a common side effect of CVID unfortunately. Its a widening of the airways although its different from ILD.

twoster 08/03/2017

I'm trying to join this group but I'm new here and can only find this here, not in the support group pages. I've just been diagnosed with ILD and am concerned as I feel it's being pretty aggressive. Please help me join this group.

rlazzaro 10/15/2021

I have been diagnosed with ILD. The lining of my lungs are involved. I also have scarring in my lungs. I do have sob and have to take a 6 minute pulse ox walk to see if I qualify for supplemental oxygen. I would like to be in contact with others with ILD to find support and give support. I know it is progressive and the prognosis is not good.

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