Sunday, April 26, 2020

What If the World Changed With Us?: Innovation and Accessibility For All

This post on Facebook caught my eye last night, reminding me of my first trip outside of my home after the governor of my state required all citizens to wear a mask when out in public around others at grocery stores and pharmacies. I had to decide between my safety, or my hearing aids. If I wore both, the bands would rub up against my hearing aids, obscuring and blocking sound. I decided the hearing aids would stay at home. I could make it without them. I'd bob and weave my way through the store. After all, I had lived for quite a few years with moderate hearing loss in both ears. Little did I know it was going to be a tough outing.  

I got to the store, bobbing and weaving the whole time, working my way through the produce, meats, and dairy putting my vicious peripheral vision to the test. People came up behind me a couple times, but it was manageable. Now I found myself at the deli. I had to yell as loud as I could to verbalize my deli order to the counter man. The fabric blocked my lips, suppressed the sound coming from my throat and mouth. I prayed, as my heart raced, that he understood my order. Then, turning away, I sighed with some relief convinced that the hard part of this outing was over. At checkout, my troubles began, the woman was saying something. I communicated that I could not hear. Yelling, "I can't hear." I had no idea what the woman bagging my groceries said to me. My heart raced, my armpits oozed under my hoodie, and the rest I can't remember. It wasn't until I got to the car that I realized she was scolding me for bringing my own bags into the store. I was ashamed, and angry. I drove home, speeding, angry, Metallica and Iron Maiden rattling the doors and chassis of the SUV. I was livid. How could our country put us in the position? Why is everything so damn hard for me? I will not be denied! No!

Then I got home, cried, sanitized my groceries, and went for run. After that run I knew I needed a different mask. A mask that tied onto my head, and was not anchored by my ears. I did some research found a friend that is able to sew. I found another way, because I always do, but why was it always on me to find that way, to pave the way to innovation?

Wouldn't it be nice if the world changed with me.

Masks are just one, small example of how our lives have to change in order for us to move forward into life post COVID-19, but pre-vaccine. Adapt and pivot. The world needs to be like a good point guard in basketball, plant its foot, and then take a series of brave, bold steps to find the one that will give us a clear shot to the basket, or a hand up with an assist from a nearby player. It is imperative that this happens now before we head back into the world post stay-at-home orders. And while no one is better equipped for it than families and individuals hit with medical challenges, adapting and pivoting has to be the mindset for all. The attitude of grit, perseverance, and innovation needs to be adopted by the rest of the world. Life finds a way, they say. Let's find it together.

Sunday, April 12, 2020

Patient Worthy COVID-19 Survey About Medical Care and Information Sharing

Just like CCA, Patient Worthy will not be stopped by COVID-19. Both organizations are dedicated to the patients we serve. On behalf of Patient Worthy, we would love for our craniofacial community to come together to share about how their medical experiences have changed, or stayed the same, during the current pandemic. 

If you are not familiar with Patient Worthy, they are a clearinghouse for news about rare disease. They also connect patients with the latest in research, new treatments, and medical providers that specialize in a wide variety of specialties in the rare disease world. Rare disease patients can also share their stories. Learn how to contribute your voice here. 

Right now, in the wake of the COVID-19 pandemic, they are asking their friends to fill out this survey about how medical professionals, medical nonprofits, and fellow patients can help us along this uncertain journey we all face as medically complex individuals during this unique time in history. 

You can learn more about the survey on Patient Worthy's website. Rebekah Horsting, Community and Content Manager at Patient Worthy describes the survey as an effort that they launched in collaboration with te Snow Companies, "to learn more about how the COVID-19 pandemic is impacting patients and caregivers and the way they manage healthcare." A direct link to the survey can be found below. Thank you, in advance, if you choose to take part in this little bit of research. 

Monday, April 6, 2020

Masks For All: Cover Your Nose and Mouth To Prevent the Spread of COVID-19

By Kara Jackman

The Center for Disease Control recommends that people across the country wear masks to protect themselves from contracting COVID-19. Unfortunately, not all the members of our community are able to wear the typical mask outfitted with elastic straps that wrap around the ears. Kids and adults in our community wear hearing aids, BAHA hearing aids, have prosthetic ears, or do not have ears at all. Masks must be accessible to all whom need them during this worldwide pandemic. Some sort of face covering will be part of our every day lives moving forward, especially when in mixed company outside of our homes. 

In this video, I demonstrate one face covering that ties at the back of the head with two sets of thin strips of fabric. Both strips of fabric tie behind your head, easily lacing together like draw strings. 

There are other options, too. You can purchase a prefabricated mask that loops over both ears, and then take paper clip, string, ribbon, or a piece of elastic and lace it though the existing ear loops to create tension and support around the back of the head.  This tension will secure the mask to the back of head, and keep it in place. Ear Community posted on their Instagram page an image of their mask hack using a paper clip. Another option is a strap placed at the back of the head, outfitted with two buttons to hook the ear loops around. Check these options out below. 

I hope this helps people. Moreover, it is my desire to never leave anyone unprotected. Wearing the mask does not mean you can, or should, go out if you at high risk of contracting COVID-19 and not surviving it. Check with your doctor before wearing a mask. Listen to their advice about what to do. This video and blog post should not replace advice from your doctor. 

Please remember to wash the mask in hot soapy water, and then wash your hands before placing the mask on your face. Always be as squeaky clean as possible before touching your face. When you are out and about, do not touch your face, or adjust the mask without a sterile, clean barrier between you and the mask. This barrier could be a fresh, clean paper towel, a new nitrile glove, or a new piece of facial tissue. 

We are in this together. No one will be left behind! We all deserve access to the things of life that we need to survive and thrive.