#primaryimmunodeficiency | Explore Tumblr Posts and Blogs

stacyspoonley · 1 year

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#adayinthelife of a #spoonie : Food shopping at @stopandshop in the little cart, listening to @moetheband . I've worn my #facemask for over a decade now. This one is a @harrypotterfilm flannel #MaraudersMap pattern I made a few years ago. Shirt from a @idfcommunity Walk for #PrimaryImmunoDeficiency of yesteryear. Have to stay safe! Happy #RareDiseaseAwareness month! . . #symptoms #dysautonomia #pots #gastroparesis #primaryimmunedeficiency #mastcellactivationsyndrome #dreads #raredisease #spoonielife #dreadlocks #systemicmastocytosis #ehlersdanlossyndrome #research #cure #chronicillness #curvygirl @rarediseasedayofficial @nord_rare @rare @rareis___ @rarediseasedayus #invisibleillness (at Stop & Shop) https://www.instagram.com/p/CpG6TH_tJvU/?igshid=NGJjMDIxMWI=

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korumedical · 2 years

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Jessica’s PI Story

It’s World PI Week and I’ve got PI! Private Investigator? Nope! Primary Immunodeficiency. Still not getting it? Well, there are different types of immunodeficiencies, but I have Common Variable Immunodeficiency / Hypogammaglobulinemia. This means I don’t have enough Immunoglobulins in my blood to fight off germs or form immunity to illness. The paranoia everyone has been experiencing with COVID is the everyday reality of Common Variable Immunodeficiency patients. We’re also very susceptible to cancer.

Everyone who has CVID is born with it, although many of us do not get severe until later in life. My disease got very bad when I was around 30 and getting constant infections. Other related autoimmune diseases started showing up at about the same time. I knew something was terribly wrong.

For five years I was a hopeless wanderer, going from doctor to doctor pleading for help. Their reactions varied; some said there was no underlying disease causing my body to implode. Yeah. Okay. Most, on the other hand, wanted to help but didn’t know how because they’d never seen a case like me. We’re few and far between.

The day I was diagnosed was one of the best days of my life. Sounds crazy, but it’s true. Although there’s no cure, the disease does have a treatment. People sell their plasma, and immunoglobulins are extracted from that plasma. So I get some immunoglobulins from other people (indirectly) every week. I have my own infusion pump and have been trained to do infusions subcutaneously at home. That way I don’t have to go and wait at a hospital, exposing myself even further to germs.

I have a lot to be grateful for: excellent specialists, my Freedom60 pump, and good insurance. Many don’t have it as good as I do, so I don’t dare complain. Why am I telling you all this? Well, now you know my story and maybe it will save someone you know from being a hopeless wanderer. Maybe you sell your plasma and I want to say THANK YOU for allowing me to live something akin to a normal life.

- Jessica S.

#cvid #primaryimmunodeficiency #worldpiweek #zebrastrong

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akabrat · 5 years

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Please if anyone watches this make sure you let them know to educate themselves on #primaryimmunodeficiency #piawareness #thegooddoctor @thegooddoctorabc @abcnetwork I would be more than happy to speak to any #localnews before or after as a patient about #piawareness & the @idfcommunity this would be also a good reminder to #donate plasma have a #plasmadrive #lasvegasnews @ktla5news @ktnv @abcnews #zebrastrong #cvidawareness #beavoice #advocate #bethechange #positivevibes https://www.instagram.com/p/B4om4I_AJUh/?igshid=18a8vlfx8oope

#primaryimmunodeficiency #piawareness #thegooddoctor #localnews #donate #plasmadrive #lasvegasnews #zebrastrong #cvidawareness #beavoice #advocate #bethechange #positivevibes

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pickett007 · 5 years

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💪🦓 Raw. Exposed. Unedited. Warrior. Surivior.🦓💪 This is me. All of me. The one I hide. The one you will probably never see because the mask I wear is so perfectly placed disguising all the pain sorrow, and struggle of just trying to survive in a body that constantly fails you. This is the face os Common Variable Immunodeficiency. This is the face of Gastroparesis. This is the face of Elhers Danlos. This is the face of Dysautonomia. I have always possessed an amazing talent of making survival look good. Sometimes I wonder if that is a blessing or a curse...lol I am extremely strong-willed and independent...but there are times when we must yield and admit we can't do it all alone. I thank the Lord he carries me. I would have never made it this fsr without him. This is for all the other warriors out there. I know it's hard. I know it's exhausting. I know how heartbreaking it is to lose so much to a failing body....but you are not alone. Never give up! There is hope yet! 🦓💪💪💪 #chronicillnesswarrior #commonvariableimmunodeficiency #cvid #cvidlife #primaryimmunodeficiency #zebrastrong #bloodplasma #ivig #immunotherapy #gastroparesis #dysautonomia #elhersdanlos #makeupartist #mua #mue #beauty #strongwomen #strong #fighter #real #nofilter #allnatural https://www.instagram.com/p/Bx8-ImMJW1L/?igshid=vkz354x1av35

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basementghostli · 5 years

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Major updates coming soon! For now make sure you’re feeling your best with @erbaessentials #CBD! Being a #MedicalMarijuanaPatient I’m the state of New York - I’ve tried every legitimate CBD company there is, and this is the ONLY CBD I will ever buy again. Find out why for yourself with a discount from me! Before checking out use code “BXB” for 10% off! If you buy, tag me and @erbaessentials in your post! I trust this company with my life and I encourage you to do the same 🙏🏽 ——————————————————————— #bxb #thebxb #brittanybrutality #medicalmarijuana #bodybybrutality #cvid #hypogammaglobulinemia #immunedeficiency #rarediseaseawareness #zebratales #zebra #pi #piawareness #primaryimmunodeficiency #teambrutality (at Long Beach, New York) https://www.instagram.com/p/Bwwf81VF6fk/?igshid=ywwy4jxhbxvy

#cbd #medicalmarijuanapatient #bxb #thebxb #brittanybrutality #medicalmarijuana #bodybybrutality #cvid #hypogammaglobulinemia #immunedeficiency #rarediseaseawareness #zebratales #zebra #pi #piawareness #primaryimmunodeficiency #teambrutality

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crowbear · 7 years

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F is For Foundation

While I’m floundering about being fatigued, i’m also working part time for the Immune Deficiencies Foundation Australia. If anyone knows what its like to be fatigued, its our members. Our members have Primary Immune Deficiencies. Their immune systems are buggered from birth and they face life fighting constant infections. My sister has one. I have CFS/ME – I am finding the more people I meet with…

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#CFS/ME #fatigue #piawareness #PID #Primaryimmune #Primaryimmunodeficiency #Worldpiweek #WPIW

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jo-goo-blog1 · 7 years

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Country Number 1 of 50! - CZECH REPUBLIC

#vanlife #primaryimmunodeficiency #universityhospitalwales #common variable immunodeficiency #travellingwithillness #travel #immunodeficiencycentreforwales #50in50 #rarediseaseawareness

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fairypoetic · 7 years

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#primaryimmunodeficiency #infusion #plasma #fitness #health

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chloala-bear · 7 years

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Its coming up to World Pi Week! You can help us raise awareness for Primary Immunodeficiency by liking or sharing our video!

#wpiw #primaryimmune #primaryimmunodeficiency #immunology #immune system #immune disorder #pid #immunodeficiency #cvid #xla #scid

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mirandamac25 · 6 years

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Of Ulcers and Life

Hello my friends! I know I’ve been neglecting you and for that I’m sorry. The funny thing is, during the summer I mostly felt crappy, and therefore didn’t feel like blogging. And then so far this fall semester I’ve been feeling pretty great, and so haven’t really felt like blogging…

But here I am. Back again. Like I said, so far this semester I’ve been feeling so good! I’ve only had one sinus…

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#Chronic Illness #College Life #Fall is the Best!#Peptic Ulcers #PrimaryImmunodeficiency #The Zebra Life

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inspirecommunity · 6 years

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#Repost @chronicallypositive_ with @get_repost ・・・ Sur•vi•vor - that’s you beating the odds, making it through each day. One with great courage and a true inspiration. #chronicillness #invisibleillness #chronicfatigue #raredisease #cvid #primaryimmunodeficiency #spoonie #lymedisease #epilepsy #mcas #ptsd #multiplesclerosis #chronicillnesswarrior #chronicmigraines #zebrawarrior #eds #dysautonomia #hashimotos #fibromyalgia #chronicpain #autoimmunedisease #celiac #autoimmune #illness #primaryimmunedeficiency #commonvariableimmunodeficiency #lupus #ebv #hypogammaglobulinemia https://www.instagram.com/p/BqFFcFclsTJ/?utm_source=ig_tumblr_share&igshid=1qoomug1bwqns

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stacyspoonley · 4 years

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Another #plasma #ivig day! . I'm always supporting the Immune Deficiency Foundation but right now I'm doing everything I can to get people to #donateplasma! . Each #handmade 100% cotton #Mask is $15 flat which includes materials and shipping. Buy a mask, give me the ability to buy more materials so I can make more to donate! . You are helping make masks for families w special needs, the disabled, #LGBTQIA and elderly that can't find, afford or make their own. . Remember if you want to order a mask, you have to message me with your choice and address and we'll do payment after you place it. If you need a mask and can't afford one please message me. 🦓♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿🦓 #COVID #COVID19 #CORONAVIRUS #DONATE #zebrastrong #spoonie #togetherwedazzle #riseup #adapt #ableism #fragilebutunbreakable #ZEBRAFASHION #primaryimmunodeficiency #sewing #DisabledJoy #keepmovingforward #disability #badassbitch #wheels #mycrazylife #invisibledisability #lgbt #chronicillness #raredisease @dysautonomiaintl @thedysautonomiaproject @dysautonomiasc @themightysite @ehlers.danlos @curaleaf.usa @curaleafhemp @vireohealth @joann_stores @singersewingcompany @gastroparesis.warriors @rare @rareis___ @spoonie_village @Chronicillness @spoonie_village @spooniesistershop 🦓♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿ (at Stacy Face's) https://www.instagram.com/p/CAIf966ALZN/?igshid=1nyavrften80w

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korumedical · 2 years

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Louis’ PI Story

From infancy, Louis struggled with infections. From six months on he was sick all the time. His older brother was also getting sick often. Louis was about 1 year old when we had his older brother tested for allergy/immunity to see if that was the root cause of his illnesses. Allergies were not the cause, but it turned out that he had very little to no pneumococcal antibodies. The immunologist recommended a vaccine challenge, so we did it. He produced antibodies and with that, he stopped getting sick so frequently.

Fast forward about 2 years to Louis who was not quite 3 years old. We were one ear infection away from needing tubes when he was tested just as his brother was. We thought it would be the same story, he would make the antibodies and then the frequency of illnesses would decrease. He did not make antibodies with his vaccine challenge and was diagnosed with Specific Antibody Deficiency at the time. He did eventually need to get tubes placed, but that only helped with ear infections. He kept getting other infections, fortunately not too severe, but consistently needed to be put on antibiotics.

His illnesses were managed for about two years and then he became allergic to Augmentin. He was on and off antibiotics at least 6-7 times in a four-month period just as he was turning 5. His stomach was a mess, and he was missing out on so many activities and pre-k because he was sick so often.

We finally decided that we needed to start treatment. We chose to do subcutaneous infusions for him because his levels would stay more stable through the month and there would be fewer side effects. He started just after he turned 5 years old, and we have not looked back since. When he was around 7 years old, he was diagnosed with CVID (Common Variable Immune Deficiency).

He is now 10 years old and is in the healthiest stretch of his life these past two years during a global pandemic. He truly amazes us every day. He does not let anything stop him from doing the things that he loves to do. He is a very active and athletic boy who is growing like crazy. He loves all sports from playing to statistics, but his true love is lacrosse. He plays very competitively and thanks to his treatments he is healthy enough to do it. He is either at practices, training or out playing with his brother almost every day. He has recently been accepted to a National Team and we are beyond proud. His treatments were a game-changer for him, no pun intended! We are so thankful for our team of doctors and nurses.

- Gina G.

#worldpiweek #zebrastrong #piawareness #cvid #primaryimmunodeficiency

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akabrat · 5 years

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Even though I didn’t have infusion this week I still had my partner in crime hanging out with me. I’m actually feeling pretty good. I know after physical therapy I was wiped and slept all day the next day. I know it’s okay to rest. It’s hard having CVID because on my good days I keep waiting for that show to drop or waking up next day feeling like I can do it again. I always shoot for the gold expecting to be able to do it again another day. Being hopeful is way better than being doubtful. It’s not always easy but I think if I think I’m healthy more maybe I will be healthy. Also everyone deserves naps! #cvid #mycvidlife #piawareness #primaryimmunodeficiency https://www.instagram.com/p/B2cvKl1A9WR/?igshid=44bf3lcp0nnm

#cvid #mycvidlife #piawareness #primaryimmunodeficiency

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pickett007 · 5 years

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💕🦓 Today was my birthday. This is an older look I never posted and due to my latest round of being so sick and spending time in the hospital I am sorry but I can't remember all the details to the products I used the day I did this look . I do remember the glitter the glitter is from @glityourlife_ and the lashes from @scoobys_slay_and_play 🦓💕 I have been pretty depressed today as no one really wants to spend their birthday stuck in bed, but I am so very thankful that at least I am at home with my children and my pups and not still in the hospital. I am also thankful that we do have more answers now that we know I have Dysautonomia and that is what is causing my horrible issues with gastroparesis. I have many Doctor appointments and testing ahead and will continue to work with my doctors to hopefully get all my issues and my health in a better place. I am hoping and praying to be able to do a new makeup look soon as I miss it tremendously. It truly is my therapy. Thank you all for your thoughts, prayers, encouragement and support. #commonvariableimmunodeficiency #primaryimmunodeficiency #gastroparesis #dysautonomia #elhersdanlos #zebrastrong #makeup #makeupartist #cvid #cvidlife #ivig #chronicillness #slave2beauty #beautyaddict #birthday #itsmybirthday #gemini https://www.instagram.com/p/Bx3oPvbJB-Z/?igshid=cyhogtx4kvvf

#commonvariableimmunodeficiency #primaryimmunodeficiency #gastroparesis #dysautonomia #elhersdanlos #zebrastrong #makeup #makeupartist #cvid #cvidlife #ivig #chronicillness #slave2beauty #beautyaddict #birthday #itsmybirthday #gemini

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allnewlashes-blog · 6 years

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Coming from a person who lives with an #invisibleillness this statement rings true!💙 Anyone else? * * * * * * * #cvidmua #cvid #Zebrastrong #spooniewarrior #strongereveryday #primaryimmunodeficiency #chronicpain #chronicillness #girlswithvitiligo #livingdappled #vitiligonation #itsaspottedthing #spottedisbetter #vitiligopride #vitiligobeauties #vitiligansofinstagram (at McMinnville, Oregon) https://www.instagram.com/p/BoahRiWBIzh/?utm_source=ig_tumblr_share&igshid=1wgwvsan6zs7a

#invisibleillness #cvidmua #cvid #zebrastrong #spooniewarrior #strongereveryday #primaryimmunodeficiency #chronicpain #chronicillness #girlswithvitiligo #livingdappled #vitiligonation #itsaspottedthing #spottedisbetter #vitiligopride #vitiligobeauties #vitiligansofinstagram

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