The time has come! My life has been 27 years of constantly falling ill with chronic infections and thinking “next time it won’t happen,”  because I’ve. Got. This. I have a primary immune deficiency, one that is so lovingly termed, the “Bubble Boy Disease.” Thanks to technological advances like gene therapy and heroes like David Vetter, the “Bubble Boy” himself, I don’t have to live in an actual bubble. Translation: I must be invincible! Welllll… many, many complications later, including antibiotic intolerance and gastroparesis, I’ve discovered I’m not invincible. Gasp. Shocker.

I live in the vibrant city Chicago. I travel, often times abroad to see family and explore the world. Basically, I like to see people and be amongst them. Yet, like those with primary immune deficiencies or other rare diseases that weaken the immune system, it is extremely difficult to be out among humans and not fall ill.

Our diseases are genetic, and while we can’t control much of what will happen to us health-wise, we can take preventative measures. I have just finished recovering from my second infection in three months, complete with a high-dose course of antibiotics. It happened to be while I was visiting family. Here is my guideline I’ve come up with to help survive the holiday craziness-omg I have to cook for how many people?—I’m-freezing-to-death times of the year where we are more frequently exposed and susceptible to infection.

  1. The Mask: 

People are going to cough, sneeze, and splutter—just about everywhere BUT the inside of their elbow, like we all should as to not infect innocent, unsuspecting, head-in-the-clouds bystanders. In fact, they might even be cutting their old, yellow toenails in front of you while doing it—this happened to me once when on a train traveling abroad. It was, to put it in one word, unforgettable. What’s the solution to people’s lack of personal hygiene? Try wearing a surgical mask! These can be purchased at your local drugstore or pharmacy. Put a few in a ziplock bag and carry them with you. I like to pack a few of these and put them in different bags I use, so regardless, I will always have one with me.

These don’t necessarily function well to prevent the wearer from getting airborne diseases. However, for something like the flu, where the virus is carried through water droplets, it can really help. When someone is coughing and spluttering around you, the water droplets will fall on the mask and not your face. It is also an extra measure to encourage you not to touch your mouth or nose without washing your hands. Wear it in crowded areas — on the train, in the malls, hospital waiting areas, and on airplanes. They need to be switched every 6-8 hours; so if you’re taking a trip, again, bring a few.

In our society there are so many negative connotations with wearing a mask. People can take a few steps back from you, or might avoid you all together. In the end, remember you are trying to do yourself a favor. So, relish that extra space on the train when people switch seats, and put your feet up! Make the mask wearing experience fun! Do you want one with a mustache drawn on it? How about fun rainbow colored polka dots? A pig’s nose? All hilarious, and all available to you. It just takes a quick search on Amazon or Etsy to find these. Or, if you’re feeling creative — make your own design! Bejewel it, or draw some zebra stripes to show your love for RARE.

WASHING-HANDS2) Don’t Skip the Sink–Wash Your Hands!

If you aren’t able to wear your mask in crowded areas, make sure to always carry hand sanitizer. I also put one in a few of my bags just in case. Obviously, washing your hands with warm water and soap is ideal, but when you aren’t able to — hand sanitizer can do the job.

3) Communicate!

This one is so important, and the hardest to do sometimes. If you are traveling to see friends and family, ask *AHEAD OF TIME* if anyone happens to be ill. As you can see, I did not do this, and I paid the price. My body is still throwing its fists up in the air at me for loading it up with another course of antibiotics. If your loved ones are aware of your limitations, they will understand the precautions you have to take. Consider carefully for your health whether or not it will be okay to risk traveling and being in close quarters with someone who is ill. These decisions are never easy, but I personally have spent some holidays alone with my husband because I couldn’t risk my health worsening.

communicateWhile I would have preferred to be with family, we made the most of it, watching old movies and eating dairy free chocolate and gluten free pumpkin pie. Can I just say quickly, that I am counting down the days until my stomach will allow me to have gluten and dairy again? That day will be a holiday of its own, in which friends will be invited for homemade chocolate pie that doesn’t have tofu in the filling and crushed almonds as its crust.

So, please, give the mask a try, remember to wash your hands frequently, pack your medications, and be honest with others about protecting your health. Enjoy the holiday season, whether on your couch, alone, watching your favorite movie, or with family and friends, sitting around a table filled with scrumptious food, and then again, sitting on a couch. Be merry and be healthy!

 

About Ashanthi De Silva

Ashanthi De Silva is a rare disease blogger and patient advocate living with SCID-ADA. Originally from Ohio, she graduated from Ohio State University with an undergraduate degree in international relations and a Masters in Public Administration. She lives with her husband and Shih-tzu mix fur ball, Maya, in Logan Square, Chicago, and enjoys traveling every year to see family in Sri Lanka. She is involved with raising awareness for primary immune deficiencies through the Immune Deficiency Foundation. Her new blog, Life with PI (www.lifewithpi.com) focuses on story sharing of her personal experiences, as well as other patients and caregivers

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