One of the most confusing things that I had to figure out when Lexi was first diagnosed with Cystic Fibrosis was what mask to have her wear. You can google cystic fibrosis mask and you find an unlimited amount of information, and it’s often misleading. I asked some CF experienced moms what masks their teens wear, but often received different opinions. Even knowing when to wear a mask can be confusing. It’s an important decision, and was very frustrating not to get clear answers.
Lexi had her every three month Cystic Fibrosis clinic this week at Phoenix Children’s Hospital. A CF patients routine clinic schedule is every three months. During clinic the patient will meet with the doctor, nurse, nutritionist, respiratory therapist, social worker, and any extra specialists are needed for their unique care plan. Lexi wore her Cambridge Mask to CF clinic this week, and that sparked a conversation with the doctor about choosing what mask is appropriate for what situations. Lexi’s dad took her to clinic, and he had never realized what went into the great mask debate. He was eager to share what he learned from our doctor’s perspective, but first here is just a little background.
Go ahead and Google Cystic Fibrosis Mask. Here’s a picture of what appeared when I Googled.
I wouldn’t do this blog justice if I did not begin with a caution on the Vogmask. As you can see from it being the second finding in the search, the Vogmask is often associated with Cystic Fibrosis. The Vogmask is a pollution mask, and through all I have researched does a wonderful job of doing what it is made to do. Keeping pollution out of your airways. What is important for every cystic fibrosis warrior to know is that the particles for pollution and germs are very different. A pollution mask will not provide the health benefits needed to protect you from the spreading of germs, as the particles for germs are much smaller and will travel through the barriers of the mask. As we know, germs are the evil little trolls that seek out CF Lungs.
This has been such a problem for the CF community that the Cystic Fibrosis Foundation was required to release a news alert warning CF patients against the use of the Vogmask. Comfort and style often make people overlook the safety concerns, especially teenagers, but why wear a mask if you aren’t protected? Do I place the blame for the misconception that Vogmasks are safe for CF patients on the company itself. Personally I could not find any direct marketing where the mask company claimed to be safe for CF. However, I do know that companies often pay to appear first in google searches, so there might be some hidden marketing in the Vogmask placement. I do think that the company has failed to speak up and clarify that their masks are not germ safe. In my opinion, they seem to be taking the route of plausible deniability. Simply one mom’s opinion based on what I have observed. So, from all my research, CF patients put those Vogmasks away!
The favorite mask in the Klein house is the Cambridge Mask. Hands down for comfort and style this is the mask that Lexi feels most comfortable with. Cambridge Mask even has a Cystic Fibrosis pattern that has been designed by a cystic fibrosis patient. The CF community has been on fire with praise over the Cambridge Mask. Plus, the Cambridge Mask DOES have added benefits to protect you from germs. Here is a little information from the Cambridge Mask website.
- 99.6% average filtration of viruses
- “Cambridge Masks N99 tested filters have been treated with silver to kill and block 99.6% of all viruses.”
- 99.77% average filtration of bacteria
- “Cambridge Mask is N99 tested and has been treated with silver, which means it blocks and kills 99.77% of micro particles such as airborne bacteria”
- 99.7% average particulate filtration down to .3 microns
Mother researched, clinically tested, teen approved. No problems right? Well, slow down.
When you receive a diagnosis of Cystic Fibrosis you are handed this giant binder, well at least we were at our clinic. That binder is directly from the Cystic Fibrosis Foundation and contains “all you need to know” about living with CF. Well, not really, but there is seriously a lot of information in that binder. I will admit I don’t often go straight to the binder, but I do often Google (I like google) “cystic fibrosis foundation”…(and then whatever I’m looking for. You see the Cystic Fibrosis Foundation is the most valuable resource for a CF patient and their caregivers. They can provide you with information, support, and resources for most everything effecting your life with CF.
The CF Foundation never waivers from their message related to masks. Two words, surgical mask. That said I am thankful for a doctor that helps you find balance between living your best life and staying safe. Now, disclaimer, not all families necessarily agree with our decisions and that is ok. I’m a member of several CF groups and know that parents take a very wide range of approaches to their kids CF safety. There are parents that don’t let their kids play in the dirt because of bacteria. Our doctor says let kids get dirty! There are parents who don’t let their kids swim in public pools. Our doctor says dive in the pool, but stay out of the hot tub. A perfect example is the recent Five Feet Apart Movie. Many CF patients have gone to see the movie, but others sent me some nasty grams for letting Lexi go to the movie. I respect other families choices, and simply ask that everyone remember we do what is best for our family.
Back to masks. Our doctor 100% agrees that surgical mask in the only way to go in the clinical environment. It is by far the safest way to go. When you are in an environment where you have a very high likelihood of exposure, there is no room for risk. I can say I would expect no different from a good doctor. But, as I said before, our doctor is wonderful at balance, and acknowledged that day-to-day your probably not going to just run into someone else with cystic fibrosis. There are approximately 328 million people in the United States, and only about 30,000 of them have cystic fibrosis.
So the final verdict? Let Lexi wear her Cambridge Mask when traveling, in large groups, concerned about germs. However, when coming to a clinic environment keep the Cambridge Mask at home, and opt for a good old-fashioned surgical mask. That’s how the Klein’s will find balance in letting Lexi live her best life.
In October, 2020 I wrote a follow-up blog about masks in the COVID world. The link is below if you would like to hear more.
One final thing to add. Remember that we are here to support and encourage one another. The world has too much negativity. The decisions we make for our family may very well not be the right decisions for others. We were not put on this earth to be judge and jury.
You, therefore, have no excuse, you who pass judgement on someone else, for at whatever point you judge another, you are condemning yourself, because you who pass judgement do the same things. – Romans 2:1