#ebnurseeducator

Each month, debra of America’s “Ask the Nurse” series will highlight a commonly asked question received by our Acting Nurse Educator, Shawn Tavani, R.N. This month’s post focuses on wound healing & the flu. Let’s get started!

QUESTION: I was doing OK with my wounds healing but when I caught the flu, my wound healing slowed down. Does the flu affect my wound healing?

ANSWER: That is a great question. Having an illness, such as the flu, along with EB, can complicate the healing process. Your immune system was previously focused on wound healing, but with the flu, the immune system becomes weakened and refocuses on the flu itself. The flu becomes its primary target. Because of this refocus, wound healing can slow down during illness such as the flu, and there could be an increased susceptibility to infection of wounds.  During this time, there are a few things you can do to help yourself: get some rest, be diligent with wound care, and make sure you are getting adequate nutrition while you are ill. Hopefully by incorporating these recommendations you will start to feel better, your body will recover, and you may see your wounds heal as they were prior to becoming ill.

To read more commonly asked questions, visit: debra.org/nurse

If you have an EB care-related question for our EB Nurse Educator, Shawn Tavani, RN, 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 Acting Nurse Educator, Shawn Tavani, R.N. This month’s post focuses on the revolutionary skin graft procedure that was recently covered in The Atlantic, the New York Times, NPR, and other major news sources. Let’s get started!

QUESTION: I recently saw a new piece where a little boy in Germany had much of his skin replaced with gene therapy altered skin grafts. I would like to know more and see about having this done for my child. How do I get this treatment for him?

ANSWER: This is incredible and exciting news in our world. The experimental skin grafting procedure was performed on one individual with Junctional Epidermolysis Bullosa, and is currently not a research trial open for enrollment. The results of this procedure serve as a great advancement in the scientific world, and hopefully hold promise for the future of EB Research. Mike Jaega, President of DEBRA International, released a statement regarding the particular trial and what may happen next:

“This is without doubt an incredibly interesting trial and a positive step forward that has had remarkable results. There has been a huge amount of interest and positive awareness since this story broke into the public domain. As someone with EB, I think it should be noted that this was a trial with a Junctional EB patient and the young man had to have extensive operations and monitoring. The results of this trial are an enormous step for those suffering from Junctional EB, but that doesn’t automatically mean it will transfer to other types and subtypes of EB. We need to support the next step in this process to explore if or how this trial can help other types of EB. The fantastic thing is that all these trials are a step in the right direction; one monumental step in finding viable treatments for EB around the world. It’s a hugely exciting time for research but we must keep our feet on the ground while we continue to reach for the stars. Gene and cell therapy trials, and even innovative ideas producing new dressings and appliances to help people with EB, are all important." Click here to continue reading. 

DEBRA International is a consortium of 56 national debra organizations worldwide. Brett Kopelan, Executive Director of debra of America, serves on the Executive Committee of the DEBRA International Board of Directors.

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 Acting Nurse Educator, Shawn Tavani, R.N. This month’s post focuses on biofilm. Let’s get started!

QUESTION: My son has a medium sized wound that isn’t healing with the use of a foam dressing and Aquaphor. I’ve even tried using some Polysporin on it but it just won’t heal. I have noticed a “film” on top of the wound as well. What should I do?

ANSWER: From your description, you may be dealing with a biofilm presence on the wound. Biofilms are a major obstacle to wound healing. Biofilm are complex communities of microorganisms, containing bacteria and fungi. The bacteria are embedded in a thick, slimy barrier of sugars and proteins which protects the bacteria from external threats. In order for wound healing to progress, the biofilm needs to be dealt with first. Debriding of the wound and would cleansing is the best method for ridding of the biofilm. Keep in mind that it is very difficult to rid of all of the biofilm at once as any non-visual remnants of the bacteria/biofilm has the potential to regrow and form a new biofilm on the wound. To avoid this, debridement may need to be done regularly.

The use of antimicrobial dressings and agents to kill microorganisms can help prevent biofilms from reforming. The most commonly used antimicrobial agents impregnated into bandages are silver and honey. Topical antibiotics can be used as well. The best indicator of knowing if the biofilms are gone is the progression of wound healing.

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 Acting Nurse Educator, Shawn Tavani, R.N. This month’s post focuses on esophageal strictures. Let’s get started! 

QUESTION: My 4 year old son who has Recessive Dystrophic EB (RDEB) is complaining of “food getting stuck in his throat” when he tries to swallow it. What is happening? 

ANSWER: He most likely has an esophageal stricture. 

Esophageal strictures are a serious complication of EB, with the RDEB subtype being the most prone to them. The esophagus is lined with the same tissue as the mucosa, which is also prone to blistering and sloughing and will form strictures of scar tissue where an area is affected. The act of eating can be difficult due to these issues with the mouth, throat and esophagus. Because we can’t see those areas with the naked eye, we have to depend on signs from those affected to know that they are having issues. Often, children will complain of it hurting when they swallow, will swallow hard, eating slower, and food may even get “stuck” at the area where the esophagus has narrowed from a stricture. They may even vomit the  food item because it won’t go down the esophagus. If forceful enough, the lining of the esophagus may also be vomited up as well as blood.  

To test for a stricture, a radiology test called a barium swallow can be performed. On the films, you can see the narrowed areas.  Sometimes there is only one stricture, and sometimes there are more. A procedure called an esophageal dilatation can be done to “reopen” the esophagus so that food can once again, move down to the stomach to be digested. A person may need to have repeat esophageal dilatations throughout their life to maintain an open esophagus, but the frequency can vary from person to person.   

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 Acting Nurse Educator, Shawn Tavani, R.N. This month’s post focuses on feet. Let’s get started!

QUESTION: My son has EBS and has been getting more blisters on his feet. While I know how to treat them once they appear, what can we do to prevent them?

ANSWER: For many with EBS, blistering on their feet is life altering. We often focus on blister treatment instead of prevention, but prevention can be an option for keeping blisters at bay.

Most people only think of using bandaging after a blister exists to aid in the healing process, but bandaging can also be used as a preventative measure on the feet. While there is not one specific product/bandage that will work for everyone, bandages can provide “padding”, especially in areas more prone to blistering on the feet, and may possibly reduce the amount of blistering that occurs. Non-adherent dressings are options that are used most often. They can be placed anywhere on the feet and either secured with rolled gauze for more protection, or with a retainer-net dressing like Tubifast or Surgilast. For some, a sock may work well enough too. Keeping the foot dry is also important in reducing the occurrence of blistering as sweat can make the feet moist and more suceptible to blistering. That may require the changing of socks during the day or even the use of antiperspirant products. Another preventive measure to try is the use of balms and sprays that runners use to protect their own feet from blisters.

While there is not one perfect option for everyone, you can individualize what works for your son. Hopefully some of these options will lessen his blister occurrence and make him more comfortable.

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 Acting Nurse Educator, Shawn Tavani, R.N. This month’s post focuses on corneal abrasions. Let’s get started!

QUESTION: My daughter won’t open her eye and says it hurts. She also says light is bothersome. Is this a sign of a corneal abrasion? What do we do to treat it? How can we prevent it from happening in the future?

ANSWER: Yes, this sounds like she is experiencing a corneal abrasion.

Corneal abrasions are a common complication of Epidermolysis Bullosa and can occur in all types of EB. While mostly seen in DEB and JEB, there have been cases of eye involvement in EBS as well. Any rubbing, itching, or other trauma done to the eye can potentially cause an abrasion.

Prevention is key in reducing the occurrence of corneal abrasions. Using lubricating gel ointments and drops can reduce their occurrence for many people. Using the ointments or drops before bedtime is recommended and, if needed, they can be reapplied during the day, especially for people who tend to have chronic corneal abrasions. Protective contacts, applied by an ophthalmologist, can also be used in preventing corneal abrasions in those who are more prone to them as well. Because corneal abrasions can cause progressive scarring and reduced vision, prevention is key. 

Corneal abrasions are extremely painful and often debilitating while the cornea heals. Because the eye becomes light sensitive, staying in a darkened room is often more comfortable for a person experiencing a corneal abrasion. The use of lubricating drops, pain relievers, and even prescription eye drops can aid in the healing of these abrasions. Occasionally, an ophthalmologist may also use a contact “bandage” to assist the healing process and make the eye more comfortable. Your ophthalmologist should be notified of an occurrence and a plan should be devised so that treatment can begin quickly to alleviate the discomfort and begin the healing process. A corneal abrasion will gradually resolve within a week and the person can continue their normal activities.

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 Acting Nurse Educator, Shawn Tavani, R.N. This month’s post focuses on braces. Let’s get started!

QUESTION: My daughter's dentist is recommending braces. Will she face problems with braces because she has EB?

ANSWER: The prospect of braces is worrisome for many parents of children with EB. There is potential for mouth sores and if braces are painful, they may interfere with food intake. That said, many individuals with EB have tolerated braces well. One suggestion from an EB dentist is to place a couple of brackets first, to see if the oral cavity can tolerate braces. Another suggestion is to use dental wax to cover the wires and smooth the surfaces of the braces to provide additional protection. You may want to ask your dentist if Invisalign is an option for your child. As with any child with braces, meticulous oral care will be required to get the best results.

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 EB Nurse Educator. This month’s post focuses on Aquaphor. Let’s get started!

QUESTION: Can you tell me about the program Aquaphor offers to receive jars of it for free?

ANSWER: Aquaphor is a non-medicated topical that when used alone, or on a dressing, can help maintain a moist environment on the wound bed. When used on dressings, it helps to prevent sticking to the wound. Beiersdorf, the maker of Aquaphor, does have a program that provides jars to patients at no cost to them. Families who would like to receive free Aquaphor may call their customer service line at 1-800-227-4703 to register for this service. A letter from you/your child’s physician is required, and it should state the patient’s name, contact information, diagnosis & treatment plan, and that Aquaphor is a medically necessary part of the patient's care. This letter needs to be emailed or faxed to them (their customer service rep will provide you this information). Once you are registered, patients can typically request a new case every 3 months. This program is available to U.S.residents only.

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)