16 Things People With Primary Immunodeficiency (PI) Wish Others Understood

This year, April 22 – 29 is World Primary Immunodeficiency (PI) Week. The Immune Deficiency Foundation has dedicated the entire month of April to PI Awareness. Having a primary immunodeficiency indicates that there is a part or parts of person’s immune system that doesn’t function as it should. Patients with PI fall sick often, and the infections can become severe quickly. There are more than 250 types of PI, often making the pathway to diagnosis lengthy and complicated. Some are diagnosed as children, and others have waited and continue to wait years before receiving a diagnosis. Imagine living a life filled with hospital visits, many sick days, and endless doctor referrals before you can reach an answer. These are the journeys people with PI have taken.

Doctors are often told in medical school, “When you hear hoofbeats, think horses, not zebras,” meaning look for what what is most common. The PI and rare disease community often promotes the concept of “think zebra,” encouraging doctors to also consider and look for diagnoses that might be uncommon when other methods or diagnoses aren’t working.

The Mighty has teamed up with the Immune Deficiency Foundation to ask people with PI, and their loved ones, what they wish others understood about their lives.

1. “I would like other parents to know that when they send their kids to school with a cough or fever and it spreads to my child, she doesn’t fight it off in a couple of days like most. More often than not, she gets so sick that she ends up in the ER, missing days upon days of school.” — Michelle Rash

2. “I want people to be more understanding if I have to cancel plans. Yes, we made plans yesterday. Yes, we talked about it this morning. And yes, my illnesses really hit me hard out of nowhere and I can’t even get out of bed. We are still friends, though! — Kelly Deery

3. “(PI) is real, and it kills. It took my 4-year-old.”  — Parsons-Long Shannon

4. “All our ‘vacations’ are centered around hospital visits.” — Nicole Thuotte

5. “As a parent of a child with PI, one thing I’d like people to understand is the importance of vaccination. Herd immunity is critical to keeping my son healthy.” — Heather Burns Huot

6. “I was so sick of being sick and tired all the time. I was not diagnosed until I was 42. That’s a long time when you don’t feel good. I am so grateful to have finally found a doctor who finally gave me a correct diagnosis.” — Sherry Sawula

7. “You learn how to be your child’s nurse. Between the infusions, doctor visits and illness, you learn, because your child’s health depends on you.”  — Melissa Cann

8. “Just because I make it to work every day does not mean I am well or feel good. I go to work on many days when others would take off — because they only feel like this a few days a year, not weeks at a time. When I do stay home it’s because I literally cannot get out of bed.” — Dana Overstreet

9. “My energy wholly depends on my infusion schedule. I have one ‘good’ day per week, which is when I try to see friends. They think it’s the norm, but they don’t see the aftermath. They don’t know how I feel on the days before and after an infusion. And without insurance, my infusions would run me $20,000/month (at a discount). I will be fighting insurance companies for the rest of my life.”  — Marjorie

 

10. “It is really frustrating when family members bring over a child who is getting sick when they know you have PI and have explained it many times. Three days later, I have a two-week virus and their kids are in school and OK.” — Betty Filippelli Gordon

11. “When you find a doctor you trust, you’ll ‘fight to the death’ to keep them.” — Malea Lynn

12. “Because of my daughter’s PI, she has had the opportunity to meet some amazing doctors and nurses who are not only brilliant, but also kind, strong women. As a parent I couldn’t ask for better role models as she grows up. Despite the bad days, the influence of those who care for her is remarkable.” — Kristina Webb

13. “To the families and friends of patients with PI, please be loving and supportive even when you might not understand. It’s hard on you, but it’s even harder on the person.” — Tiffany Kaye Ryan

14. “It’s real, but it’s different for each person. It’s a disease that has an impact on every aspect of your life. Symptoms can change day to day or last months. It means joint pain that makes it hard to move or sleep and chronic infections. It means isolation for fear of coming in contact with someone who has a cold— because for you it’s an infection that lasts for months. It means endless rounds of antibiotics and steroids that treat symptoms, but compromise your immune system further.” — Lauren Pillote

15. “Many adults with PI have suffered with the full constellation of disease and other symptoms that often mysteriously accompany it (autoimmune diseases, cancer, treatment side effects, etc.) for many years and have fought for diagnosis and treatment. We were once the ‘little zebras’ that were often ignored, forgotten or bullied because no one understood our illness. But, we take comfort in knowing we are not alone and there is help thanks to the pioneering work of IDF.” — Suzanne McDonough

16. “Your feelings are real. No matter how many doctors appointments or pills that don’t work, you are not alone. Stay strong.” — Monica Jefferson

Are you affected by PI? What’s one thing you wish others understood about your life? Let us know in the comments below.

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