#primaryimmunodeficiency hashtag - Bluesky

#IVIG #SCIG #CVID #primaryimmunodeficiency #myastheniagravis #myositis #Dermatomyositis #CIDP #polymyositis #guillainbarresyndrome #secondaryimmunodeficiency #stiffpersonsyndrome #immunodeficiency #chronicillness #Igtherapy

2 months ago

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Michelle Van Loon

@michellevanloon.bsky.social

2 months ago

I saw a new doc today, and showed up with a one sheet summary of my health history and a fact sheet about my rare #primaryimmunodeficiency. I asked her to review before we begin the exam.
"Wow, you are prepared," the doc said.
I wanted to say, "This is what medical trauma looks like". But I didn't.

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Redacted 🇺🇸 MN

@altskywarn.bsky.social

2 months ago

I am going to be So angry if I catch measles. #primaryimmunodeficiency #zebra

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#patienteducation #patient360 #IVIG #SCIG #CVID #primaryimmunodeficiency #myastheniagravis #myositis #Dermatomyositis #CIDP #polymyositis #guillainbarresyndrome #secondaryimmunodeficiency #stiffpersonsyndrome #immunodeficiency #chronicillness #Igtherapy #biologics

2 months ago

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#patienteducation #patient360 #IVIG #SCIG #CVID #primaryimmunodeficiency #myastheniagravis #myositis #Dermatomyositis #CIDP #polymyositis #guillainbarresyndrome #secondaryimmunodeficiency #stiffpersonsyndrome #immunodeficiency #chronicillness #Igtherapy #biologics

2 months ago

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Denise Reich

@writerdenise.bsky.social

2 months ago

Hiding in Plain View I have two different rare conditions, primary immunodeficiency and hypersomnia. Neither condition was diagnosed until I was in my 30s. That’s not because I didn’t… Continue reading Hiding in Plain Vie...

#RareDiseaseDay is coming up next month. Here's my story, shared with RDD several years ago:. #CVID #PrimaryImmunodeficiency #hypersomnia
www.rarediseaseday.org/heroes/hidin...

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#patienteducation #patient360 #IVIG #SCIG #CVID #primaryimmunodeficiency #myastheniagravis #myositis #Dermatomyositis #CIDP #polymyositis #guillainbarresyndrome #secondaryimmunodeficiency #stiffpersonsyndrome #immunodeficiency #chronicillness #Igtherapy #biologics

2 months ago

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Denise Reich

@writerdenise.bsky.social

3 months ago

My Mask | NOH8 Campaign

I did a #NOH8 photo earlier this year and made a conscious choice to appear as I normally do - masked.

I wore masks before the pandemic, and I still do, because #PrimaryImmunodeficiency is for life. #disability #Masks #ChronicIllness
www.noh8campaign.com/article/my-m...

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#IVIG #SCIG #CVID #primaryimmunodeficiency #myastheniagravis #myositis #Dermatomyositis #CIDP #polymyositis #guillainbarresyndrome #secondaryimmunodeficiency #stiffpersonsyndrome #immunodeficiency

3 months ago

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#immunoglobulin #IVIG #SCIG #CVID #primaryimmunodeficiency #myastheniagravis #myositis #Dermatomyositis #CIDP #polymyositis #guillainbarresyndrome #secondaryimmunodeficiency #stiffpersonsyndrome #immunodeficiency

3 months ago

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The Zebra Alliance Community

@thezebraalliance.bsky.social

4 months ago

#PrimaryImmunodeficiency is considered rare, but, like hEDS, experts think its not necessarily rare–Rather its underdiagnosed.
😷 PI is a group of more than 550 Rare, Chronic Conditions.
😷 PI is also called #InbornErrorsOfImmunity (IEI).
🧬 PI is a Genetic Condition: primaryimmune.org/understandin...

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🆂🅷🅴🆁🆈🅻 🆂🆃🅴🅸🅽 she/her

@sherylstein.bsky.social

4 months ago

An unusual coincidence solved the mystery of the scary nosebleeds and low platelet counts Doctors couldn’t figure out what was causing her scary platelet count, but Sheryl Stein had a theory.

Sitting in the airport trying not to stare at some of the strange agents. Found this medical mystery article from the WaPo about me and how I was diagnosed with #cvid. Posting in case it helps someone. @immunedeficiency.bsky.social #dis #chronicillness #chronicallyawesome #primaryimmunodeficiency

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🦋💙Dr Karen💙🦋

@drkarenphd.bsky.social

4 months ago

A CVID (Common Variable ImmunoDeficiency) barbie doll wearing a t-shirt saying "JUST LET ME SIT DOWN" A sign on the box saying SYMPTOMS: Dizziness, frequent infections, autoimmune disorders, avoiding crowds. To the right of her is a chair with an IV bag above it. Two spray bottles 1. Antibiotics 2. Germ water.

Someone in a #CVID group on Facebook had #ChatGPT create this. She forgot #MASK and a #PORTCath in her chest...otherwise...I get it!
#ChronicHealth #Lupus #RA #PrimaryImmunodeficiency #CommonVariableImmunoDeficiency #IVIG #SCIG

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🦋💙Dr Karen💙🦋

@drkarenphd.bsky.social

4 months ago

An evil looking ram with very large horns stands on the side of a bedroom, to the left of the bed. Caption reads: "When you try to pronounce the names of your prescriptions...but accidentally summon Satan instead"

👇I feel this way EVERY DAY🤣
#ChronicIllness #CVID #COVID #LongCovid #PrimaryImmunodeficiency

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Sevgi Kostel Bal

@sevgikostelbal.bsky.social

5 months ago

And reporting negative or unexpected results is just as essential as sharing success stories — it’s how our field continues to evolve.

#PrimaryImmunodeficiency #Immunology #HSCT #RareDiseases

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@healioguidance.bsky.social

5 months ago

💙 Day 2 of the Latin American PID Patients Meeting brought us closer together – patients, doctors, partners and advocates united in strengthening PID care and awareness.

Thanks to CSL and Grifols for the support.

#IPOPI #PID #LASID2025 #BuenosAires #PrimaryImmunodeficiency #PIDAdvocacy

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Healio Clinical Guidance

6 months ago

Primary Immunodeficiency | Clinical Guidance | Healio Access free, up-to-date clinical guidance on primary immunodeficiency at Healio. We offer valuable insights for identifying, assessing, treating and managing this condition.

📢Our primary immunodeficiency module is live!

✅Recognize the spectrum of these disorders

✅Apply evidence-based treatment guidelines

✅Implement a multidisciplinary care model to address patients' needs

👉 www.healio.com/clinical-gui...

#PrimaryImmunodeficiency

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@stevejgordon.bsky.social

6 months ago

🌍 Coming soon: IPOPI’s Eastern European Awareness and Advocacy Workshop!

Stay tuned for updates from Budapest! 💙

#IPOPI #PrimaryImmunodeficiency #PIDPolicy #EasternEurope #PlasmaAccess #AdvocacyInAction

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Steve Gordon

7 months ago

I've decided to open up and occasionally post about my experience here. Partly as a means to raise awareness (especially around the value of plasma donation) and to hopefully help others facing a similar diagnosis searching for information. #cvid #raredisease #primaryimmunodeficiency
(5/5)

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Rye | Mad RYEintist 🧪🍞💜

@ryeordie.bsky.social

8 months ago

Survived the night pumped up with antihistamines and corticosteroids. Still in my 72-hr post IVIg state, so taking PRN post-IVIg steroids today just in case. Every time I consumed something yesterday my immune system panicked 😅 May have learned of a pine nut allergy? #ivig #primaryimmunodeficiency

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8 months ago

Have you checked out the Proceedings from IPOPI’s 2024 Global Stakeholders Summit?

Don’t miss out on this must-read! Our summer newsletter is packed with the season’s most impactful insights 🌍💡

👉 e-news.ipopi.org

#IPOPI #SummerNewsletter #PrimaryImmunodeficiency

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8 months ago

Patients, families, and healthcare professionals from over 11 provinces across China united to shape the future of PID care nationwide.

👉 Read the full article here: e-news.ipopi.org

#PrimaryImmunodeficiency #RareDiseases #SummerNewsletter

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Redacted 🇺🇸 MN

@altskywarn.bsky.social

9 months ago

#primaryimmunodeficiency #zebra
2025 Medical Summit info-
web.cvent.com/event/620d5b...

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9 months ago

IPOPI is proud to share the results of our global survey on the long-term effects of COVID-19 in people living with primary immunodeficiencies (PIDs)!

📖 Discover the full publication 👉 lnkd.in/d6yx2uvA

#IPOPI #PrimaryImmunodeficiency #LongCovid

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