#Stayathomestories

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Stay-At-Home Stories: Carlos

In an effort to prevent the spread of COVID-19, individuals and families across the nation are distancing themselves from others and spending more time at home. Our Stay-At-Home Stories blog series highlights some of the creative ways in which our EB Community has been passing the extra time at home in the midst of the pandemic.  

Read on for 7-year-old Carlos’ Stay-At-Home Story.

Hi everybody!

My name is Carlos Yidonoy. I am 7 years old and was born with recessive dystrophic epidermolysis bullosa. I was in the middle of the 1st grade when COVID-19 made me and my friends and family stay home. I no longer went to school every day, but I did get to spend every day with my parents at home. At first, it was weird because both my parents usually work during the day. Now they were home with me all day which was kind of nice. My dad worked from home and my mom spent her days trying to home school me. It wasn’t easy for either of us.

After a few weeks, my school began “distance learning.” Instead of going to school, I met with my teachers and friends online. This meant I only got to see them twice a week on my iPad. I miss seeing and playing with my friends in person, but at least I talk to my best friend almost every day through video chat. We play Minecraft together and share anything new going on.

It’s been hard staying at home for so long and not being able to go out. I miss going to eat out or seeing my cousins and grandparents. We talk on Facetime, but it’s not the same. I hear about this coronavirus on TV, but I am not entirely sure what it is. I just know that it would be bad if I got it, so I try to stay home as much as possible.

Staying at home does have its good side. I have cut down on accidents and have been able to leave body parts like my hands and arms unwrapped that used to be wrapped all the time. I have also been eating better and gaining weight which is great for me! Also, I don’t have to go through as many bandage changes as before. Unfortunately, we did miss out on the Debra Care Conference. I remember the last one and had a lot of fun meeting new friends that also had EB like me. My parents said we can go to the next one, so I have that to look forward to.

Also, I picked up new hobbies. I am really good at puzzles and building LEGO’s. I also love playing NERF guns with my dad. My mom doesn’t let him shoot me with the darts, but I can shoot him all I want. It’s funny to watch him run away.

I hope I can go back to school soon. My parents want to make sure it’s safe before I go. In the meantime, I’m having fun hanging out with my family at home.

Thank you, Carlos, for sharing your Stay-At-Home Story!

If you have EB or care for someone with EB and would like to share your Stay-At-Home Story, please email staff@debra.org.

[thatawaydad]

Life Under Coronavirus: Week 12

Life Under Coronavirus: Week 12

Seeing one of the largest springs in the world and visiting a French fort in America were the highlights this week.

Day 78 Coronavirus

This morning I had the last of the Cinnamon Toast Crunch cereal and Andrew had some Apple Jacks.

He was in train track mode this morning. First, we made a huge train track upstairs with three bridges, a tunnel, and lots of curvy tracks that took up most…

[debraofamerica]

Stay-At-Home Stories: Andrew Conrad

In an effort to prevent the spread of COVID-19, individuals and families across the nation are distancing themselves from others and spending more time at home. Our Stay-At-Home Stories blog series highlights some of the creative ways in which our EB Community has been passing the extra time at home in the midst of the pandemic.  

Read on for Andrew Conrad’s Stay-At-Home Story.  

My name is Andrew Conrad. I am 33 years old, live in Chicago and am a professional investor. I am happily married to my lovely wife, Colleen, and we recently adopted a kitten, Webster, who is currently around 12 weeks old. Some of you may know who I am from my prior posts for debra of America. I have Recessive Dystrophic EB.

The past four months of the Covid world have been busy for us! Both my wife & I had major trips get canceled in March, which was a bummer. She was spending a week in Portugal and I was headed to Antarctica to run a half marathon. Work came to a grinding halt very quickly for me after that. Both of us have been working from home since the middle of March.

As far as what we have been doing during lock down, we took two road trips thus far. In April, we went to the Smoky Mountains and rented a cabin with a view for a week. This was pre-Webster! We were able to pack most of our meals. It was great to get out of Chicago and into nature for a week.

Then at the end of May, we took a road trip down to my mom’s house in South Carolina along the coast. We stayed for two weeks. It was great to be able to get to the beach and also use the neighborhood pool, both of which we do not have access to here in Chicago. Near the end of the 1st week, I had just come home from a run and saw a kitten running around my Mom’s front yard while being dive bombed by birds. Colleen was able to grab him, bring him inside and find a nice kitten size box for him to hang out in. At first, he was obviously scared, but it didn’t take him but a few hours to warm up to us. We took him to the vet the next day and he received a clean bill of health. He did great on the 15-hour drive home as well. He has adapted to life in Chicago just fine. And we have adapted to life with a kitten as well!

As far as exercise goes, at the initial part of the lock down, with the lack of information, it was hard to know if it was even appropriate to go outside. But once we got over that, I have been pretty consistently running at least 3 miles a day outside, averaging about 135 miles a month throughout the lockdown. It has been great to keep consistent and have some semblance of a routine. It has been hot, humid & sunny here in Chicago. I put on a lot of 100 SPF sunscreen when I head out and bring a lot of water, but it has been great to get in a good sweat in the heat. The only issues I have with the heat and humidity has really been my feet due to the friction and all the miles. I am usually out of commission for a few days every other week, but I try not to let it keep me out for long!

Finally, I have been getting out in the mornings and at night for photography a lot during the lockdown. Although for a while, it was a bit difficult with certain areas closed so access to the good spots was not available. It has been good for sanity to get out with my photo buddies early in the morning. It was especially interesting during the initial lock down when nobody was out and about. I post a select amount of photos on Instagram so if you would like to see some of my work, feel free to follow me there.

Both Colleen and I have enjoyed being home and spending time with each other, and it has been nice that we both have the capacity to work from home and be productive. With that said, we look forward to the day that things get back to normal and we can travel again, hang with friends, eat at restaurants, and do the normal things that we all took for granted 8 months ago!

Thank you, Andrew, for sharing your Stay-At-Home Story!

If you have EB or care for someone with EB and would like to share your Stay-At-Home Story, please email staff@debra.org.

[debraofamerica]

Stay-At-Home Stories: Ariana Covarrubias

In response to the COVID-19 pandemic, stay-at-home orders were implemented across the nation to keep us indoors in order to protect ourselves and others. Our Stay-At-Home Stories blog series highlights some of the ways in which our EB Community has been passing the extra time at home and how the pandemic has affected them.

Today’s Stay-At-Home Story belongs to Ariana Covarrubias, a student at California State University Los Angeles and past debra of America Spirit Award honoree.

As a college student, it has definitely been a challenge to go forward with my academic learning while staying at home. However, with the lack of the in-person college experience I was able to gain long-lasting skills such as self motivation and organization skills. Due to my brother and I having EB, my family has taken extra precautions to keep us all safe. We've minimized our outings to only essential things and we've increased our disinfecting routines. Unfortunately though, my EB has noticed the change. Due to the temporary closure of clinics and other medical services, I had been unable to see my doctors until just recently. This has taken a toll on my skin as it's been harder to combat infections and improve the healing of my chronic wounds.  

A message that I'd like to share is to always keep others in mind when going out and/or having social outings, as not everyone has a strong immunity to overcome the virus. I hope everyone will continue to stay safe and gain strength from our current obstacles.

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Watch Ariana’s recent YouTube video below where she bravely talks more about the impact that the pandemic has had on her EB and mental health: 

[debraofamerica]

Stay-At-Home Stories: Mohamed Duklef

In response to the COVID-19 pandemic, stay-at-home orders have been implemented across the nation. Although these orders are starting to be lifted, it’s important to continue to take extra precautions and if possible, to stay indoors to protect ourselves and others.  

Our Stay-At-Home Stories blog series highlights some of the creative ways in which our EB Community is passing the extra time at home. Mohamed’s Stay-At-Home Story is a little different! He’s an essential healthcare worker so the pandemic has impacted his daily life in different ways. Watch the video below for Mohamed’s Story.

Thank you, Mohamed, for your hard work and dedication through these challenging times! You are a true inspiration to our Epidermolysis Bullosa (EB) Community.  

[debraofamerica]

Stay-At-Home Stories: Hodges R. Caldwell, Jr.

In response to the COVID-19 pandemic, stay-at-home orders have been implemented across the nation. It’s important to stay indoors to protect ourselves and others —but it doesn’t mean that we can’t have some fun while we’re at it!  

To keep our EB Community members connected to one another and to bring some joy to these difficult months, we've launched a Stay-At-Home Stories blog series that highlights some of the activities that EB individuals and families have been getting into to pass the extra time at home. Watch Hodges’ Stay-At-Home Story below. 

Hodges, who lives with Junctional Epidermolysis Bullosa (JEB), was debra of America’s 2019 Spirit Award Winner, making him the first adult to receive the honor. Get to know Hodges a bit more here. 

If you have EB or care for someone with EB and would like to share your Stay-At-Home Story, please email us at staff@debra.org!

[debraofamerica]

Stay-At-Home Stories: Lindsay Martin

In response to the COVID-19 pandemic, stay-at-home orders have been implemented across the nation. It’s important to stay indoors to protect ourselves and others —but it doesn’t mean that we can’t have some fun while we’re at it!  

To keep our EB Community members connected to one another and to bring some joy to these difficult months, we've launched a Stay-At-Home Stories blog series that highlights some of the activities that EB individuals and families have been getting into to pass the extra time at home. Read on for Lindsay Martin’s Stay-At-Home Story.

Hello everyone!  

My name is Lindsay Martin and I'm a 26-year-old Drummer. I live in Los Angeles, CA and have EB Simplex.  

During this time, I've been practicing, exercising, reading, eating clean and finding other small odd ball things to do to stay busy and help me get through this!  

My blisters have been doing okay throughout this... the two major things that cause some blistering is the exercise and practice.  

With exercise... I committed to doing this program called "#75HARD" (created by Andy Frisella) which is when you do two 45-minute workouts, drink a gallon of water, no cheat meals/alcohol, read 10 pages, and take a progress picture daily for 75 days. I decided to do this challenge for both the mental and physical aspect. I've been taking Epsom salt baths to help with the healing of blisters!

With the Cali heat, sweat, and friction of the sports bras... It's definitely been a bit painful at times and has caused a sports bra blister line. (see pic below)  

When practicing... I usually practice 3-4 hours daily. Drumming is my favorite thing on the entire planet! With the long practice, sweat, and holding sticks for that time, my hands have gotten super calloused and every other night, I put a bunch of Vaseline on them, put in gloves, and let them soak in them overnight. I'm working on some collaboration videos with some talented musicians... as soon as they're done, I will share with Debra!!

With both activities being painful and frustrating at times to deal with blisters, I power through and take the necessary steps at the end of each day to heal. Drumming is my world and exercise is another huge passion of mine... so I've learned to adapt and overcome!

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Keep up with Lindsay on YouTube and Instagram.

If you have EB or care for someone with EB, and would like to share your Stay-At-Home Story, please email staff@debra.org

*debra of America does not promote nor endorse the products and techniques mentioned above. If you believe you, your child, or someone you know, suffer from Epidermolysis Bullosa, please see your healthcare provider. Do not attempt to treat yourself, your child, or anyone else without proper medical supervision. 

[debraofamerica]

Stay-At-Home Stories: The Federici Family

In response to the COVID-19 pandemic, stay-at-home orders have been implemented across the nation. It’s important to stay indoors to protect ourselves and others —but it doesn’t mean that we can’t have some fun while we’re at it!  

To keep our EB Community members connected to one another and to bring some joy to these difficult months, we're launching a Stay-At-Home Stories blog series that will highlight some of the activities that EB individuals and families are getting into to pass the extra time at home. Read on for Heather & Ashleigh Federici’s Stay-At-Home Story.

Greetings from Maryland!

We’re staying home, staying safe & definitely staying busy. Our family is taking full advantage of this unprecedented situation by soaking up all of the fresh air & sunshine Mother Nature doles out this spring.

Ashleigh is enjoying spending her afternoons in the backyard on the trampoline, exploring the garden & cruising around the neighborhood golf course looking for bunnies.

It’s not all play & no work for this little butterfly though. Ashleigh spends a few hours every day with her therapists diligently working at the office (AKA the sunroom). She’s mastering matching, puzzles & making requests using the special technology on her iPad. Ashleigh may have even been sighted vacuuming on one occasion.

Every day is a new adventure!

If you have EB or care for someone with EB and would like to share your Stay-At-Home Story, please email staff@debra.org.  

[thatawaydad]

Life Under Coronavirus: Week Eight

Life Under Coronavirus: Week Eight

Exploring the mudflats of a lake and walking in silica sand were the highlights of week eight during coronavirus.

Day 51 49th Birthday During Coronavirus (Earlier Blog Post) Day 52

Breakfast today was leftover cereal and finally, two large boxes are out of the cupboard. Since being home fulltime we go through a ton of cereal. I heard on the news recently that cereal buying is on the…

[debraofamerica]

Stay-At-Home Stories: Destiny Fuentes

In response to the COVID-19 pandemic, stay-at-home orders have been implemented across the nation. It’s important to stay indoors to protect ourselves and others —but it doesn’t mean that we can’t have some fun while we’re at it!  

To keep our EB Community members connected to one another and to bring some joy to these difficult months, we've launched a Stay-At-Home Stories blog series that highlights some of the activities that EB individuals and families are getting into to pass the extra time at home.  

Read on to find out what Destiny, who lives with Recessive Dystrophic EB, has been up to!

Hi, my name is Destiny, I am 13 years old living with EB. During the stay at home order, I’ve had lots of time to relax and play. I love playing with my toys. Some of my online supporters even sent me new goodies to unwrap and stay busy. I also got a new video game for my Nintendo Switch; it’s so cute and fun. Lastly, my dad painted my room my favorite color teal. My family has been helping me redecorate my room and I am super happy.

Three years ago, Destiny started a YouTube channel so the world could “see the hope and joy that I have despite my illness.” Check out our last blog post with Destiny where she tells us more about her channel.

If you have EB or care for someone with EB and would like to share your Stay-At-Home Story, please email staff@debra.org