Common Variable Immune Deficiency

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Common Variable Immune Deficiency
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How does your illness(es) affect your schedule? Is yours well controlled?

This is what my chronic illness schedule looks like for the remainder of the month into April. It’s not even including my 4hr. home infusion I receive monthly either. #Spoonie #RareDisease #ChronicIllness #CommonVariableImmuneDeficiency #ChronicPain #Arthritis #Sarcoidosis ##ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #Fibromyalgia

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Does managing your illness(es) feel like a full-time job?

I’ve got all my specialist appointments scheduled for the new year now that my deductible has hopefully been met. Time to start pursuing treatment plans, procedures, diagnoses, etc. It starts all over again. Back on the phone being a secretary. The trips to Atlanta are often extraneous too. It’s exhausting being chronically ill & there’s no paid leave or vacation time from it. I just wish I could escape it all somehow. It feels like everything falls on the patient. I’ve worked very hard organizing a team of Emory doctors so they’ll communicate with one another better over my care. It hasn’t been easy because I’m a uniquely “difficult” case due to my PI or primary immunodeficiency on top of everything else. I can’t just take biologics & steroids all the time because it lowers my ability to fight infections & I’m already prone to them. That’s why I receive monthly plasma infusions. It just makes pursuing my other rare diagnosis that much more difficult since I don’t produce my own antibodies. I need the official diagnoses so I can reapply for SSI again. It’s just so costly being this sick & disabled. I’m over it. How do you bear the burden of it all? I rely so much on my spouse & immediate family for support. I can’t even drive myself anymore. I want my independence & health back. Unfortunately, the older you get the more our immune systems get depleted. I’m determined to continue on fighting & advocating for myself. Thanks for having me in the Mighty community. It means a lot to have a place to come to that understands. #Spoonie #ChronicIllness #ChronicPain #ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #RareDisease #Sarcoidosis #Arthritis #CommonVariableImmuneDeficiency #PTSD #MentalHealth #Anxiety #ObsessiveCompulsiveDisorder

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WISHING YOU A HAPPY ST. PATRICK’S DAY! ☘️

Be a lucky charm for the primary immunodeficiency community by donating plasma today! IMMUNE DEFICIENCY FOUNDATION #RareDisease #CommonVariableImmuneDeficiency

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Does anyone else have experience with port catheters?

Probably going to have my chest port removed. It’s still causing pain & discomfort. I’ve had it coming up on 6-7 years. My heart & chest muscles are inflamed after the port study, iron infusions & in-home plasma IgG infusions. It was accessed repeatedly in a short time frame. I’m just not sure why it’s malfunctioning now but, my heart’s not having it. I need it to stay healthy but, I feel like it’s going to potentially shorten my lifespan at the same time. I can’t go through another replacement surgery. I’m just about ready to call it quits. If I get sick with pneumonia then so be it. These past few years of extra life I’ve been granted were enough. My daughters are about finished graduating from high school. I got to see them grow up. I’m content with how far I’ve come on my healthcare journey. #ChronicIllness #CommonVariableImmuneDeficiency

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Primary Immunodeficiencies (PI) are a group of more than 450 rare diseases.

An estimated 1 in 2,000 people are diagnosed with a primary immunodeficiency in the United States. This makes PI a #RareDisease . With PI, part of the body’s immune system is missing or doesn’t function.🦓 #RareDisease #ChronicIllness #CommonVariableImmuneDeficiency

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Please keep me in your thoughts & prayers?

I’m super nervous for my chest port study I’m having done to find out why it’s not working. #ChronicIllness #RareDisease #CommonVariableImmuneDeficiency

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Where do you find joy in life?

Happy throwback Thursday, to happier times, when I was still able-bodied! I was in my early twenties & this was at the park. I had given birth to two girls before getting sick. Well, before being diagnosed I should say! I’ve been sick most of my young life. It just wasn’t until later on that it became more readily apparent. I used to love the outdoors & grew up near a lake. I was always very adventurous & outdoorsy growing up. It was my refuge. Now I’ve been entirely cut off & rarely if ever venture out. I stay isolated in my dark bedroom with little to no stimulation. My only access to the outside world is an iPhone. Ever since getting it a couple years ago my hands became deformed from arthritis. I have swan neck deformaties in my right hand & dupuytren’s contracture in the left. My elbows stay permanently bent & I have ankylosis of the shoulders. I have visited many orthopedic surgeons & upper extremities specialists to no avail. I have lost so much range of motion & mobility from chronic widespread inflammation. I’ve been trying to seek an official diagnosis for Sarcoidosis on top of my other rare disease. It’s very disheartening. #ChronicIllness #ChronicPain #ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #Spoonie #CommonVariableImmuneDeficiency #Arthritis #ankylosis #Anxiety #Depression #Agoraphobia #BipolarDisorder #MentalHealth

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being chronically ill is a full time job.

I have been chronically ill my entire life. I don’t remember a time when I wasn’t battling some kind of infection. I was born with a rare disease known as primary immunodeficiency or PI for short. More specifically CVID or common variable immune deficiency which usually affects children. I wasn’t diagnose until the age of 28! I receive monthly plasma infusions of Gammagard through a chest port. It helps to maintain my IgG levels since I cannot produce my own antibodies. Basically it just means I’m prone to infections like pneumonia. #piawareness #Showyourstripes #zebrastrong #DonatePlasma #RareDisease #RareDiseaseMonth #InvisibleIllness

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