Primary Immunodeficiency

Join the Conversation on
Primary Immunodeficiency
1.4K people
0 stories
140 posts
About Primary Immunodeficiency
Explore Our Newsletters
What's New in Primary Immunodeficiency
See full photo

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

16 reactions 5 comments
See full photo


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

See full photo

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

1 reaction
See full photo

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

3 reactions 1 comment

After living with primary immunodeficiency, osteoarthritis, narcolepsy, asthma, gi issues incl malnutrition, and more for many years, ive met my match

I have been hsving severe skin issues, worsening lung and breathing issues, sudden renal hypertension and general high blood pressure and loss of function in my hands, and even sudden unexplained cardiac issues for just over 5 years now. And it has been an awful experience for the most part where doctors refuse ti believe how bad thjngs are and either im causing lots of the thing i experience myself, or saying its a new psychiatric condition i developed, a nurse this past week who has known me for a number of years was once again havjng a very hard time getting an iv in so i could havd my ivig treatment it seemed like the skin on my arms has become very thick and tough and my veins themselves are no linger very good and tend to really just disappear. This is not the heard these same things. But this nurse went a step further snd connected the dots with a bunch of other symtoms that have started over the past 5-6 years and the worsening and resistance to treatment of my asthma and muscle and joint issues, and asked me if anyone has thought of or mentioned testing to determine if i might actually be having symptoms of systemic scleroderma. I hadnt ever really heard about this condition, but suddenly dojng research about it this week i feel pretty certain thar when and if i can get an md to seriously listen and consider this posdibility, im going to end uo having a confirmation if this diagnosis. The way i have been treated as thjngs have progressed has come close to really breakjng me, especially cimbined with the severity of discomfort pain and disabiity that have progressed pretty significantly over these last years. But i am known as a miraculous survivor and people think im a really strong person. And somehow i have managed to get through these really difficult experiences over these last years abd still be a generally happy, optimistic person who works hard to make a difference in this world but as i have resd more and more medical articles and had somehow come to terms that this probably my dagnosis the progression i am likely tibexperience (and up to this point the progression of symtoms matches what is described with this disorder almost to the finest details) i feel relief that there kosy likely a medical explsnation for ehat ive been experiencing, but i also fe my will to continue trying to fight and live my life as i have always managed to somehow continue or return to doing, is quickly evaporating. My life has been an amazing and wonderful one i am so grateful for, but the degree of difficulty i have experienced also been very extremr and im tired, so tired and so traumatized by the way i have bedn trearmted as the symptoms have appeared and progressed, that i dont feel like have whats needed this time to call upon to give me the strength and determination to live my life and somehow make this experience havd some positive meaning for me and in the way i am who i am in this world. I have even through medical crisis after crisis when there has been strong indication this was the final straw for my body, and after many years of struggling to handle a life with bipolar and very severe complex trauma from so many years of so many different really horrible ongoing traumatic experiences i have been able to rise stronger and more grounded, happier and more able to share my gifts ghrough each of these things, but this time, when i am so close to reaching the age if 55 when i was never thought to medically have a chance of survival even as a newborn, i have done all i have the strength to do in trrms of being resilient and fighting for what i have always felt so impirtant and my entire reason i exist, and its not that i want to die ir anything, but i literally sont feel i have what i need to possibly keep putting one foot in front of the other and being as present in each moment as possible and taking life moment by moment and all i can imagine is staying in my warm bed cuddling my very spevcial and sweet kitty and chatting with absolute soulmate if a best friend who lives thousands of miles from me and just not pushing function and have a life beyond thise three things from here forward. I cant see how i will ever be capsble of one foot after the other moving through this difficulty for however much longer i am blessed with this existence and fighting to continue. So please light a candle in the dark, say a whispered prayer and or send me all the loving kindness you can when you read this. Thanks

1 reaction

I'm new here!

I'm a former Electrical Engineer and
Math/Statistics teacher, now that I can't work I knit, crochet, and quilt! I'm here to give and receive support, as my condition is very isolating. Looking for community!


I think I'll take a sick day

I was sick all the time and by all the time I mean for over twenty years if someone sneezed; I got a sinus infection. My stomach and GI issues were legendary, and not in a good way. It was a running joke I was the girl in the bubble because I was always sick with something.

The irony it turns out is I don’t have a functioning immune system, like the boy in the bubble. My immune system is borrowed (thank you plasma donors for sharing!). Because of that, I need to replace it every 28 days. I’m infusing antibodies to fight off infections and viruses. But those wane every month, and I have no control over what antibodies are in that treatment. So if I come across a bug I have to rely on my own body to fight it off if those antibodies weren’t in my infusion. And with an immune system that doesn’t work right…. Well, you get the gist.

So no, I really don’t have an idea of what it’s like to feel good. My good is most likely your 40-50%, and that is the honest truth.

The reality for me is that I don’t get sick days because that would be most days. And who can afford to take that many days off from life? Most can’t. I can’t.

That’s the thing about invisible illness. On the outside we look just like the person next to you in line at Target. But on the inside, we might feel like you do the day after your fever broke and you’re telling people you’re on the upswing but still need naps during the day. But I’m going to work, running our daughter to activities, going to birthday parties or meetings, washing clothes and decorating for the holidays.

When I actually take a sick day, actually stay home from work or hit pause on any one of the day-to-day activities, I’m most likely at your 15-20%. And usually that lasts about a day before I’m back it because there just isn’t the time to take. Life is happening and when you’re never feeling great, life can’t stop.

The thing is sometimes, sometimes when I hit that moment where I must take a knee it’s usually when there is an activity or commitment or event. And I have to cancel. And I feel horrible. For all the reasons you can imagine. And I feel like I need to explain. But it’s hard to explain the whole thing. It doesn’t make sense when I look normal. And you just saw me at the store or a picture of me and my family the other day on social media. But what you didn’t see was that when I got home, I needed to lay down for 20 minutes because it felt like I ran a marathon, or that I was counting down until bedtime so I could get in bed.

Always being sick has been my norm. But not many people really understand what that means. I hope this shed some light into my world. Now if you’ll excuse me, I’m going to take a sick day.

#RareDisease #PrimaryImmunodeficiency #Zebra

2 reactions

I’m new here!

Hi, my name is Courtney. I'm here because I have common variable immunodeficiency, anxiety, and migraines. Would like some support from people going through the same.

#MightyTogether #Migraine #PrimaryImmunodeficiency #MentalHealth

1 reaction 1 comment