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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CVID Emotional struggles

Serenamoon
Serenamoon

Hi, I am new to this site and am hoping this will help more on the emotional side. I was diagnosed with CVID a month ago and have had a hard time with it. We struggled to find a diagnosis for six months so it is some relief to finally have an answer. I was apprehensive at first to tell close friends and family about CVID. Family has been better than expected, while friends have been an amazing let down. I have been more or less cut out from certain friend groups. I rarely feel well enough to go out and they have stopped inviting me since the answer is almost always "I don't feel well enough, sorry." It has been tough without their support but I have an amazing husband who goes above and beyond. I have yet to get the injections, but hopefully my insurance will go through soon. I am looking forward to being apart of this group and talking with people who understand what I am going through.

sonnycamehome
sonnycamehome
Getting a CVID diagnosis is both a blessing and a curse. It's a blessing because finally you have some answers as to why you've been so sick for so long, but it's a curse because you are SO sick! I'm so sorry to hear your friends have been less than supportive. I definitely lost a few friends simply because I was never well enough to go out in the early days of my disease....it's painful and disappointing, and sadly I think it's an experience many of us go through. Chronic illness can really be difficult for some people to understand and cope with and it can be a sad process of learning who our true friends really are. I'm glad to hear that your family and husband are supportive though and are there for you when you need them.

The good news is, is that treatment does work! IGG replacement really is very effective, though it can take a good 6 months to a year to really kick in, it works. Most of us lead very normal, active, lives that include friends, social activities, families, etc...so please believe me when I tell you all is not lost. There is every reason to believe that you will lead a very normal life again once your treatments start to kick in.

Be patient with yourself and give yourself time to adjust to treatment, and give your body a chance to heal...know in time you will feel better and will be capable of participating fully in your life again...

Wishing you all the best!
Serenamoon
Serenamoon
Thank you so much for the encouraging words and advice! It is sad and nice to hear I'm not the only one who went through a period of friend loss I guess you could say. I have a few that stick to me like glue and am greatful for them.
I will hopefully start treatment in a week or two and couldn't be more excited! Thank you again:)
Sheriann
Sheriann
I'm sorry too! I am in the fourth month of my treatment and actually feeling worse despite my IgG levels going up. It's a tough road to tow and your real friends are the ones who are with you through the good times and the bad...I'm sure you know that already.
Victoria418
Victoria418
Good luck!!! It's the same with being the parent of a CVID child. Family and friends react differently, your life changes so much and I think its scary and hard for people to understand unless you are in it. Hang in there. I hope you have good doctors and a great hospital!