Practical Lifestyle Tips for EB Families

Any parent is challenged by the very nature of raising a child, but as all of us know who have been somehow touched by EB, our families have their own set of unique challenges. We’ve assembled a short list of some lifestyle tips that may be helpful for moms and dads searching for new ways to lessen potential danger for their delicate children and helpful materials and strategies to better protect them.

  • Clothing
    Soft, stretchable cotton fabrics, including 100% cotton knit, may be the most comfortable material for your child. Try to avoid snaps, buttons, zippers and any other rough or sharp edges (as with some embroidery and appliqués) that may create friction with the skin and irritate blisters.
  • Bedding
    Bedding can be made softer by using products, such as egg crates, sheep skin mattress pads, memory foam or several layered blankets, and consider lubricating the sheet or vulnerable skin area to prevent sticking to the bed covering.
  • Bathing
    As for any baby, make sure the water is not too hot  Bathing can be good for the skin and may help soften scabs but is not necessary for some EB patients to do daily. Follow physician’s orders explicitly when adding any kind of agent to the water such as bleach, vinegar or table salt.
  • First Aid
    It’s wise to carry additional dressing supplies on you at all times, in case of an unexpected injury or emergency. While contents may vary, it’s good to keep handy your physician’s emergency phone number, scissors, needles, antibiotic ointment, primary dressings, rolled gauze, retention bandage and hand sanitizer.
  • Oral Care
    Older children and teenagers might want to use the softest toothbrush available to avoid irritation with gums or damage to teeth, since tooth enamel can be fragile. For infants and small children, you may wish to try a toothette (or sponge type toothbrush).
  • Immunizations
    While children should still receive immunizations as their physician directs for children at their age, be sure to ask the healthcare provider not to rub or wipe alcohol on the immunization site which may create unnecessary friction but instead dab it, and also not to use an adhesive type bandage afterwards, such as a bandaid.

*These tips and suggestions have been helpful for most EB families.  Please consult your physician or healthcare provider for medical advice specific for your child with Epidermolysis Bullosa.

Raise Your Voice about EB

Many EB families may feel like one of their greatest challenges is the lack of public awareness about epidermolysis bullosa. There’s little coverage by news media, often limited knowledge in the medical community, schools and social circles. Organizations like DebRA of America are making great strides but there’s still much more to be done to raise public awareness of the disease, educate the medical community, and reach out to elected officials for support in securing more research funding and legislating greater insurance coverage for EB patients and their unique medical needs. As an EB parent or patient, you have a greater understanding of this disease than any organization could ever have. You too can raise your voice about epidermolysis bullosa and the challenges of living with a disease that few understand. 

One of the most effective ways you can get involved is to reach out to your own state’s elected officials. Did your state recognize EB Awareness Week this past October? If not, start lobbying your governor’s office now for next year. What are your state’s elected officials in D.C. doing to support EB families and patients and what measures are they taking to oppose policies that do not? Contact your Senators and Representatives to present your own family’s daily challenges to raise awareness and encourage them to talk with other EB families.

Earlier this year, Connecticut passed a ground-breaking bill that, according to ConnecticutPlus.com, requires individual and group health insurance policies (those that cover basic hospital and surgical expenses, major medical and HMO plans) to cover “medically necessary” wound care supplies for EB patients. (http://www.connecticutplus.com/cplus/information/news/health/Bill-requiring-insurance-coverage-for-skin-wound-care-signed52675267.shtml)

Another way you can help raise awareness is by directly getting involved as a member of the DebRA Advocacy Network, a grassroots effort to represent individuals living with EB by sending letters, making phone calls and sharing information with policymakers as new bills or legal issues arise hat impact EB patients. Individuals interested in joining the Advocacy Network can fill out a membership form at the DebRA site. (http://www.debra.org/advocacy-survey-form.htm)

If you’d like to reach your elected officials directly, here are a few important links you may wish to bookmark:

Powered by Ballywho

EB & the Importance of a Good Diet

Patients should consult with a physician to treat their condition, including with respect to the issues discussed in this article. This article does not constitute medical advice or information to any particular person. Each patient should receive individual advice from a medical professional.” 

A well balanced diet with the appropriate number of calories is essential to most children with epidermolysis Bullosa. The nutrients a child’s body absorbs typically contribute to how well the body’s skin recovers from injury. For infants, it can be even more critical, not because of standard growth and development needs, but because of proper nutrition’s impact on the wound healing process. Here’s a list of some helpful information for addressing your child’s nutritional needs, compiled from DebRA (www.debra.org) and DebRA International (www.debra-international.org)*

  • Though breastfeeding may be best for most babies, it can be challenging for EB infants. Consider feeding your baby breast milk using a special needs bottle such as a Haberman feeder with its cleft palate nipple and valve for easy milk delivery.
  • Your dietician can assist you in maximizing the calories your baby takes in by suggesting other means of adding protein in combination with mother’s milk.
  • When a baby is being introduced to pureed foods, adding extra liquid to the food may make swallowing easier, especially for babies experiencing serious mouth blisters.
  • Some parents will add an instant breakfast flavored packet to their EB child’s milk to add protein. Another method used by parents is adding dry powdered milk to whole milk. You can discuss these ideas with your registered dietitian.
  • Letting hot food and drinks cool before serving can help prevent injuries.
  • Where possible, keep hard-crusted foods like crackers, toast or thick pizzas at a minimum as they may cause swallowing difficulties or may poke at mouth blisters.
  • Reduce acidic foods and drinks, such as orange juice or tomatoes, which may irritate mouth sores.
  • Examples of foods especially rich in protein are: eggs, meat, milk and other dairy products, soy products and wheat breads.
  • It may also be important to keep optimum iron levels, especially for those EB children who may suffer from anemia. A few foods particularly high in iron: fresh fruit, dried fruit, nuts, soft brown sugar, meats, green vegetables, oatmeal, rye bread, and legumes such as lentils and kidney beans.
  • Foods that offer high carbohydrates may provide great sources of energy, especially useful for those who might be feeling sluggish from loss of blood and tissue. Great foods that may deliver this kind of energy include potatoes, bread, pasta and rice.
  • Overall, be sure to keep your caloric intake, iron and protein higher than the average diet which should be recommended by your physician or a registered dietician, so the EB patient can maintain energy and the body can regenerate enough tissue to hopefully replace the protein lost during injury or blistering.

*Please note that some foods mentioned are not appropriate for very young children with or without EB. This blog can give only general tips and suggestions and cannot provide answers to every nutritional situation. Receive nutritional information for your child by seeking the advice of a pediatric (children’s) dietitian. An individualized plan can be drawn up and reviewed regularly to ensure that it remains realistic and feasible.
Bookmark and Share

Powered by Ballywho