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debra of America is the only U.S. nonprofit providing all-inclusive support to the EB Community through funding research for a cure and by offering free Programs and Services for those with Epidermolysis Bullosa (EB).
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Ask the Nurse: Mental Health
Each month, debra of America’s “Ask the Nurse” series will highlight a commonly asked question received by our Nurse Educator, Emily Griffith, BSN, RN. This month’s post focuses on Mental Health. Let’s get started!
Question: My child screams, cries and will not stay still when it is time to do wound care. Is this something they will outgrow or is there anything I can do to help?
Answer: Children of all ages can experience anxiety and stress around wound care, bathing, and dressing changes because these events may be painful for them. The child may also experience anticipatory anxiety where memories of painful events such as wound care leads to worry and fear of future dressing changes. As a caregiver to a child with EB, you can help your child by promoting positive coping skills and a comfortable environment around stressful events. This can be done with aromatherapy, music, distraction, breathing exercises, or positive mental imagery.
Infants feel comfort when they feel secure and warm, so being sure the room is not too cold and swaddling them while exposing one extremity at a time for wound care. Toddlers and school age children want to have some sense of control. Keeping to a routine so they know when to expect dressing changes, explaining in an age-appropriate way how wound care will take place and allowing the child to actively participate can help them cope. This may be holding a bandage and passing it to the caregiver when ready or picking a show to watch during care. After the dressing change, give the child positive affirmation on what they did well.
For more information on coping skills and tips for caregivers, check out Dr. Mark Popenhagen’s (Phoenix Children's Hospital) video talk on EBconnect.org.
To read more commonly asked questions, click here.
If you have an EB care-related question for our EB Nurse Educator, please email: [email protected] or call toll-free at 866-DEBRA-76 (866-332-7276).
*The information provided herein is intended to educate the reader about certain medical conditions and certain possible treatments. It is not a substitute for examination, diagnosis, and medical care provided by a licensed and qualified health professional. If you believe you, your child, or someone you know, suffer from conditions described herein, please see your healthcare provider. Do not attempt to treat yourself, your child, or anyone else without proper medical supervision.
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Ask the Nurse: Bathing
Each month, debra of America’s “Ask the Nurse” series will highlight a commonly asked question received by our Nurse Educator, Emily Griffith, BSN, RN. This month’s post focuses on Bathing. Let’s get started!
Question: Should I use Epsom salt or regular salt to soak my EB wounds, and will this help my wounds heal?
Answer: This is a great question. It is important to know that Epsom salt is not actually salt, it is made up of magnesium and sulfur. Epsom salt soak may be someone’s preference for bathing and for others, it may not.
Instead, you can add regular salt (sodium chloride) to your bath water to help reduce pain or the “stinging” feeling of open wounds in the water. You can use regular table salt or pool salt, which may be more economical to purchase for prolonged use.
Adding bleach or vinegar to bath water for infection prevention in those with extensive or chronic wounds is common practice in EB care. Colonization of bacteria can hinder wound healing even if there is not actual “infection” present. A diluted bleach or vinegar bath can reduce the amount of bacteria on the skin that could cause infections. Bleach and vinegar may be alternated with a bath but never used at the same time. You can, however, add salt to a bleach or vinegar bath.
For measurements and more information on how to prepare a bath, click here.
To read more commonly asked questions, click here.
If you have an EB care-related question for our EB Nurse Educator, please email: [email protected] or call toll-free at 866-DEBRA-76 (866-332-7276).
*The information provided herein is intended to educate the reader about certain medical conditions and certain possible treatments. It is not a substitute for examination, diagnosis, and medical care provided by a licensed and qualified health professional. If you believe you, your child, or someone you know, suffer from conditions described herein, please see your healthcare provider. Do not attempt to treat yourself, your child, or anyone else without proper medical supervision.
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Ask the Nurse: Vaccines
Each month, debra of America’s “Ask the Nurse” series will highlight a commonly asked question received by our Nurse Educator, Emily Griffith, BSN, RN. This month’s post focuses on Vaccines. Let’s get started!
Question: Is it safe to receive vaccines in EB and are there any precautions we should take?
Answer: Vaccinations during childhood and adulthood provide important defense against serious illnesses. Vaccines allow our body’s immune system to safely develop antibodies/immunity to diseases and reduce risk of these illnesses. Routine vaccinations in EB may be given at the appropriate, scheduled times as directed by your physician. You or your child may experience a mild reaction to some vaccinations, which includes a slight fever (under 102 degrees F), soreness and/or redness at the injection site. These symptoms can typically last up to 1 to 2 days and should be discussed with your healthcare provider. When receiving a vaccine injection, remind your healthcare worker to gently dab the area with alcohol to avoid any friction from cleansing the site. The injection should be placed at the appropriate site where there is intact skin. Following the injection there should be no vigorous rubbing or massaging, just gentle pressure with an EB-safe dressing to cover the site.
For more information regarding vaccines, please discuss with your healthcare provider. You can also refer to the CDC for more info on “Understanding How Vaccines Work” here.
Click here to watch Dr. Amy Paller’s video presentation on COVID-19 & EB on EBconnect.org.
To read more commonly asked questions, click here.
If you have an EB care-related question for our EB Nurse Educator, please email: [email protected] or call toll-free at 866-DEBRA-76 (866-332-7276).
*The information provided herein is intended to educate the reader about certain medical conditions and certain possible treatments. It is not a substitute for examination, diagnosis, and medical care provided by a licensed and qualified health professional. If you believe you, your child, or someone you know, suffer from conditions described herein, please see your healthcare provider. Do not attempt to treat yourself, your child, or anyone else without proper medical supervision.
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Ask the Nurse: Hospital Tips
Each month, debra of America’s “Ask the Nurse” series will highlight a commonly asked question received by our Nurse Educator, Emily Griffith, BSN, RN. This month’s post focuses on Hospital Tips. Let’s get started!
Question: When I go to the hospital, the EKG stickers always cause blisters or pull my skin off. How can I avoid this from happening?
Answer: The adhesive portion of the EKG leads are not necessary for the leads to work; it is simply there to adhere to the skin. In EB, we need to modify the way the EKG leads adhere to the skin if they are necessary for your care. You can cut off, or sometimes peel off, the adhesive backing on the EKG sticker. If there is remaining adhesive that feels like this will cause trauma, press the sticker onto a blanket or sheet over and over to make the backing less adhesive. Next, place the EKG leads in the appropriate locations and secure in place with EB-friendly tape or bandages such as Mepitac, Mepiform, or another Mepilex product available. Similar steps can be taken for the pulse oximeter such as cutting off the adhesive portion or pressing repeatedly against a blanket to remove adhesive. However, a pulse oximeter will read through some Mepilex products unlike the EKG leads. You can place Mepitac on the finger or toe first to protect the skin, then secure the pulse oximeter overtop the Mepitac so it is not directly touching the skin.
Click here for our Hospital Care Tip Sheet for more tips on EB precautions in the hospital setting and share with your healthcare providers.
To read more commonly asked questions, click here.
If you have an EB care-related question for our EB Nurse Educator, please email: [email protected] or call toll-free at 866-DEBRA-76 (866-332-7276).
*The information provided herein is intended to educate the reader about certain medical conditions and certain possible treatments. It is not a substitute for examination, diagnosis, and medical care provided by a licensed and qualified health professional. If you believe you, your child, or someone you know, suffer from conditions described herein, please see your healthcare provider. Do not attempt to treat yourself, your child, or anyone else without proper medical supervision.
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Ask the Nurse: Face Masks
Each month, debra of America’s “Ask the Nurse” series will highlight a commonly asked question received by our Nurse Educator, Emily Griffith, BSN, RN. This month’s post focuses on face masks. Let’s get started!
Question: I have EB and I am required to wear a face mask all day for work, but I am worried this will cause painful blisters. How can I prevent this but still wear a mask?
Answer: Protecting your skin while wearing a mask is very important for those with EB. Here are a few things you can do to help: First, look for fabrics that are very soft like 100% cotton or bamboo material. Use protective bandages that can absorb moisture, such as Mepilex Lite, to prevent irritation from the mask. Mepilex Lite can be cut in a long strip over the bridge of the nose and cheeks and smaller strips for behind the ears.
Another option to relieve pressure and irritation from behind the ears is to use an Ear Saver. Ear Saver’s come in all different shapes and materials and are also helpful to adjust masks looser or tighter as needed. It is most important to practice good skin care for those that need to wear a mask for the majority of the day. Once you are able to safely remove your mask and clean your hands, gently wash your face with soap and water or a gentle cleanser to remove sweat or sebum that may have naturally built up throughout the day. Then apply a moisturizer to maintain hydrated, healthy skin.
To read more commonly asked questions, click here.
If you have an EB care-related question for our EB Nurse Educator, please email: [email protected] or call toll-free at 866-DEBRA-76 (866-332-7276).
Are you on EBconnect.org? Click here to watch Dr. Amy Paller’s informative video on Covid-19 & the EB Community.
*The information provided herein is intended to educate the reader about certain medical conditions and certain possible treatments. It is not a substitute for examination, diagnosis, and medical care provided by a licensed and qualified health professional. If you believe you, your child, or someone you know, suffer from conditions described herein, please see your healthcare provider. Do not attempt to treat yourself, your child, or anyone else without proper medical supervision.
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Ask the Nurse: Nutrients
Each month, debra of America’s “Ask the Nurse” series will highlight a commonly asked question received by our Nurse Educator, Emily Griffith, BSN, RN. This month’s post focuses on nutrients. Let’s get started!
Question: I have EB and I recently had lab work done. Some of my levels were low, is this related to EB and how I can manage it?
Answer: Nutrients play an important role in the body and wound healing, which is why it’s necessary to monitor these nutrients with EB. If your physician recommends you take extra supplements or vitamins, it’s important to know how these supplements work and interact with your diet. These nutrients can also be managed through diet as well if extra supplementation is not recommended. Iron plays an important role in preventing anemia. Iron does not like zinc or calcium, but it does like vitamin C. So, if you take an iron pill, take it with a glass of OJ instead of a glass of milk to help boost iron absorption. If you want to boost iron absorption in your diet, then have some steak or chicken with potatoes or red peppers. Calcium is important, especially in EB, for bone and teeth health. Remember calcium and iron do not absorb well together so if you take both supplements, wait at least 2 hours after taking one to take the other. Calcium is best absorbed in the body when Vitamin D is present. In order to boost calcium and vitamin D in your diet, have some eggs with cheese for breakfast and salmon with spinach for dinner.
To read more commonly asked questions, click here.
If you have an EB care-related question for our EB Nurse Educator, please email: [email protected] or call toll-free at 866-DEBRA-76 (866-332-7276).
Are you on EBconnect.org? Click here to watch Registered Dietician Colleen Vicente's Virtual DCC Presentation on Nutritional Management of EB.
*The information provided herein is intended to educate the reader about certain medical conditions and certain possible treatments. It is not a substitute for examination, diagnosis, and medical care provided by a licensed and qualified health professional. If you believe you, your child, or someone you know, suffer from conditions described herein, please see your healthcare provider. Do not attempt to treat yourself, your child, or anyone else without proper medical supervision.
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Ask the Nurse: Genetic Testing
Each month, debra of America’s “Ask the Nurse” series will highlight a commonly asked question received by our Nurse Educator, Emily Griffith, BSN, RN. This month’s post focuses on genetic testing. Let’s get started!
Question: I just had a baby and the doctors think he has EB. Some people have suggested a biopsy but some have suggested genetic testing. What do these tests do and what do I learn from them?
Answer: Genetic testing is done by obtaining a blood sample and is now considered the standard for a diagnosis of EB. A small sample of blood is sent to a special lab where they can determine the specific disease-causing variant in the DNA. The results of genetic testing allow families and clinicians to provide appropriate management based on EB subtype. The results for genetic testing can take approximately 4-6 weeks and therefore a biopsy is often done in conjunction with genetic testing because the biopsy can produce results in just a few days. For a biopsy, a small sample of skin tissue is examined in a special lab to determine whether EB-associated proteins are lacking or absent. For those with milder symptoms of EB a biopsy may not be able to tell the difference between normal and EB skin. For this reason, genetic testing is recommended because of its accuracy and its ability to know how the EB variant was inherited which is important for families planning for future children.
To read more commonly asked questions, click here.
If you have an EB care-related question for our EB Nurse Educator, please email: [email protected] or call toll-free at 866-DEBRA-76 (866-332-7276).
*The information provided herein is intended to educate the reader about certain medical conditions and certain possible treatments. It is not a substitute for examination, diagnosis, and medical care provided by a licensed and qualified health professional. If you believe you, your child, or someone you know, suffer from conditions described herein, please see your healthcare provider. Do not attempt to treat yourself, your child, or anyone else without proper medical supervision.
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Ask the Nurse: Honey
Each month, debra of America’s “Ask the Nurse” series will highlight a commonly asked question received by our Nurse Educator, Emily Griffith, BSN, RN. This month’s post focuses on honey. Let’s get started!
QUESTION: I heard honey is good for wound healing. What kind of honey should I use?
ANSWER: First and foremost, you should only use Medical grade honey on open wounds. Regular store-bought honey should NEVER be applied to the skin, especially in infants, as it may contain spores of Clostridium botulinum, which can cause infantile botulism (muscle paralysis). Medical grade honey can be prescribed by your physician and is often used for moderate to heavily draining wounds. Medihoney is a common brand used and can come in either a gel or different types of dressings. Medical grade honey is a beneficial tool to have for wound healing and infection reduction, especially when it comes to the overuse of topical antibiotics that patients can become de-sensitized to over time. Fun fact: you can store Medihoney gel or dressings in the refrigerator to provide a cooling effect for painful or itchy wounds.
To read more commonly asked questions, click here.
If you have an EB care-related question for our EB Nurse Educator, please email: [email protected] or call toll-free at 866-DEBRA-76 (866-332-7276).
*The information provided herein is intended to educate the reader about certain medical conditions and certain possible treatments. It is not a substitute for examination, diagnosis, and medical care provided by a licensed and qualified health professional. If you believe you, your child, or someone you know, suffer from conditions described herein, please see your healthcare provider. Do not attempt to treat yourself, your child, or anyone else without proper medical supervision.
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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 [email protected].
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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 [email protected].
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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:
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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.
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Thank you, Mohamed, for your hard work and dedication through these challenging times! You are a true inspiration to our Epidermolysis Bullosa (EB) Community.
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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 [email protected]
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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 [email protected]!
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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 [email protected]
*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.
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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 [email protected].
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#TEAMDEBRA Spotlight: Steve & Michele Gergans
On October 11, seven dedicated #TEAMDEBRA runners will be joining 44,000 athletes from across the globe for the Bank of America Chicago Marathon! The 26.2-mile course through 29 of Chicago’s scenic neighborhoods is one of the six World Marathon Majors.
debra of America is grateful to our TEAM DEBRA runners who train hard to raise awareness and funds to support and represent the EB Community. Joining this year’s team is Steve and Michele of Roswell, GA who are running in support of Ellie Tavani, a young girl who lives with Recessive Dystrophic EB.
To support TEAM DEBRA’s fundraising efforts, please click here.
Although the deadline to register for the Chicago Marathon has passed, you can join TEAM DEBRA for the NYC Marathon and Flying Pig Marathon. Please email [email protected] for more information.
1. Have you both run other races before? If so, what ones?
We “ran” a 5k back in 2013 for a friend’s charity, but we walked more than ran it.
2. This is your first marathon! How are you feeling about running in October?
MANY feelings come to mind: anxiety, excitement, fear, shock, denial, accomplished.
3. What inspired you to run the Chicago Marathon with TEAM DEBRA?
[Chair of debra of America’s Board of Directors] Andrew Tavani is Steve’s best friend since childhood and Michele’s sister Tracy married Andrew’s brother Gregg, so we are extended family. We’ve watch Ellie Tavani grow up to become the smart, beautiful teenager she is, but have witnessed her daily struggles with this chronic disease. Not realizing it could ever become a reality, we naively signed up to help support finding a cure for debra of America.
4. Have you started training? If so, how has your experience been so far, especially given the pandemic?
Luckily, the Tavani clan guided us towards the Jeff Galloway run program which is the run/walk interval training. In January, we started with the Dunwoody Galloway marathon training group to help gain our endurance since we were starting from scratch with running. It was hard to get up so early on a Sunday morning in COLD weather, but we’ve met amazing people and learned so much about pace, fueling and formed lasting friendships.
In April, we switched to the full marathon training group in metro Atlanta- with current COVID restrictions, we are doing Zoom calls only but hope to meet up and run together in our small groups soon. We both will need the in-person support during the upcoming long mileage runs.
5. In your opinion, why is it important to raise awareness and funds for the EB Community?
When we tell our fundraising story about Ellie, many are not aware of this disease, but they see how painful living with it can be. The world needs more awareness so it can find a cure faster.
6. What are you most looking forward to on Race Day?
CROSSING THAT FINISH LINE but also feeling the energy of the crowd. People we tell about running our first marathon say, “oh you can check that box off on your bucket list” but it was NEVER on our bucket list before, wow have things changed. We also call ourselves runners too (minds blown).
A huge thank you to Steve and Michele for raising funds and awareness in support of the EB Community! You can support their efforts by making a donation here.
To learn more about TEAM DEBRA, click here.
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