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Have you ever gone to the ER or Urgent Care and had a really hard time explaining your immune deficiency? Even though there are more than 450 types of Primary Immunodeficiencies (PI’s), they are still rare, which means many doctors or nurses may not have extensive knowledge about them. Which is totally fair! That’s why they call us zebras – no two zebras have the same stripes!
Explaining your medical condition
While it’s hard to feel different or “weird,” it’s also cool that we use the analogy of the zebra to identify ourselves. It kind of reminds me of snowflakes. When I was younger, I loved when it snowed. I loved seeing the tiny snowflakes. And when I learned that no two snowflakes are alike, I was in awe!
Just like zebras, people with CVID all have different variables to their illness that make them unique. That is why being a self-advocate is extremely important. I know myself, I know my diagnosis, and I know my body. When it comes to explaining things to others, it can be really complicated and hard to articulate.
For me personally, I have gotten nervous and stressed out about explaining my disease when I have to go to urgent care when I’m sick or when I’ve admitted myself to the ER. I am always scared that doctors and nurses could think that I’m over exaggerating or not making sense. In emergency situations, I am already flustered, and I get tripped up when trying to explain my disease in a way that is helpful and relates correctly to the situation.
Things are just different when you are immunocompromised – you have to be really careful, especially in regards to things like antibiotics or receiving procedures. As much as I understand my own disease, there are so many things about it that go over my head. Unfortunately, before my diagnosis, I had very little medical knowledge. So there are some concepts that I still can’t grasp correctly.
I am Immunocompromised Card
But, fear no more! The Immune Deficiency Foundation has come up with a solution for this issue – a card that you can download for free online, fill out, and carry with you either virtually or physically.
This is an amazing idea, and it’s super easy to use. You can get it online and fill it out online.
Here’s what the card looks like:
Since I have a lung disease, GLILD, as well, I put that at the bottom of the card, because that is important to tell the medical staff. Make sure you think of anything else related to your immune deficiency that doctors may need to know. After that, you have it all in one place, which is awesome! I plan on keeping it in my phone for whenever I need it.
I am so happy that the Immune Deficiency Foundation put in the effort to create a card like this. I love that the PI community has worked together to continually raise awareness for our diseases and empowered us to advocate for ourselves.
Never feel weird about voicing how you are feeling, especially if you have an immune deficiency. It’s better that they know so they can help you feel better. You are not dramatic, and your feelings are valid.
Get the card!
If you want to get a card of your own, click here !
If you know some other Zebras out there, go ahead and let them know about this!