#askthenurse

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).

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).

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).

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).

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.

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.

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).

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).