Primary Immunodeficiency

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Primary Immunodeficiency
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    How can we reduce time to PIDD diagnosis?

    Hi all -- I'm new to the group, looking for ways to raise awareness & help reduce time to diagnosis so that fellow PIDD patients don't have to wait so long to figure out what is going on. I'd love to hear a bit more about your pre-diagnosis stories if you're willing to share and what you think would have helped/what you wish would have happened in the first place - feel free to respond here, or send me a message directly. Thanks so much!!#PIDD #PrimaryImmunodeficiency


    What’s up with EMTs and Paramedics not taking us seriously?

    I called an ambulance in early July because of severe abdominal pain is been having for close to 12 hours and they tried to convince me not to go to the hospital, and the ER was crazy busy and succeeded in getting me triaged out to the waiting room and told to sit back down every time I tried to tell the triage nurse out tgeee I was now vomiting blood — lots of it. When I finally got taken into the ER Friday early evening I ended up hearing the words you are in need of emergency surgery — not tomorrow, tonight. When you have a primary immunodeficiency and an allergy to general anesthesia that’s even scarier than it would be otherwise. And I got discharged today from my 8th hospitalization since then. What’s with not being taken seriously when we know something is seriously wrong in our bodies? Subsequently at one same EMTs all but refused to bring me down the stairs (one of the reasons I have put myself through a move where there aren’t stairs) because he said I had done such a good job coming done with their help before, I told him I couldn’t this time and we wasted time arguing about it when I had a GI obstruction. Again, what is with them not listening to us?


    A Little About Me

    My name is Tonya. I am a chronic illness warrior and am passionate about advocacy. I love to share my story with anyone who will listen.
    I have been featured on my local news station and interviewer for our newspaper.
    I have numerous conditions such as Gastroparesis (g tube, port, gastric stimulator and on TPN) . I have Primary Immunodeficiency and infuse Hizentra. I have Ehlers Danlos, Autonomic Dysfunction and Mast Cell Activation Syndrome. I have Chronic EBV and had an Acquired Hemaphagocytosis due to being immunocompromised and catching Covid-19 earlier this year. I deal with migraines, hypotension and hypoglycemia as well.
    I'm currently writing for a migraine site and volunteer as an Oley Ambassador.
    My goal is to bring awareness of little known things about my conditions. I am always bringing new information to my doctors. They appreciate it.
    I hope to learn from you all and hopefully, you'll gain insights from me.

    #PatientAdvocacy #chronicillnesswarrior #gastroparesisawareness #GulfWarSyndrome



    Has anyone here gotten evusheld? It's been recommended due to an immunodeficiency I have and apparently can help prevent actually catching the newest variants? #COVID19 #PrimaryImmunodeficiency #MyalgicEncephalomyelitis #naturalkillercelldeficiency #evusheld


    I'm new here!

    Hi, I have recently been diagnosed with S.A.D. (Selective antibody deficiency) my doctor is booked out and it will be a month before we can discuss treatment options. I have found limited resources online. I’m just looking for any info, insight, perspective, experience on the issue. Thanks in advance. #PrimaryImmunodeficiency

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    I’m new here!

    Hi, my name is Alexis_G. I'm looking for some people to talk to that have some of the same things I would like to have someone to talk to about this all

    #MightyTogether #Anxiety #Depression #BorderlinePersonalityDisorder #AutismSpectrumDisorder #PTSD #Grief #CentralPainSyndrome #PrimaryImmunodeficiency


    I'm new here!

    Hi, my name is gabrielann. I’m new to The Mighty and look forward to sharing my story.