We value and learn from the information that families share with us and with each other. This section of the website is dedicated to our readers. This is where you can let others in the EB community know what worked for you and what didn’t. Please share your successes so others can benefit from your knowledge and experience.
If you have a healthcare tip that you would like to share, e-mail the EB Advocate Team, and we will post it in this section.
Tips from the EB Community …
because we learn from each other
Use a smaller toothbrush for a smaller mouth
Try a product like Colgate Wisp to brush your teeth, rather than a regular size toothbrush. A regular toothbrush may be too large for small mouths and its larger brush head may cause friction, irritation and bleeding of the gums. Wisp is about 3 1/2” long and flatter than a normal toothbrush. The mini brush head may help you maneuver around teeth and gums easier, which can help you achieve better oral hygiene.
Does Medigrip fray when you wash it?
Medigrip, or any other knitted elastic support bandage, can be cut to fit and applied on top of your dressings to add protection. When you wash the Medigrip, its strings may come loose and unravel. To prevent fraying, try a product like Dritz Fray Check, which you can find in craft and sewing stores. You can also try clear nail polish (apply as you would to stop a run in nylon pantyhose) or hand-stitch a basic seam like a roll stitch. One of these solutions may extend the life of the bandage and enable you to use it more than once.
Pack wound care supplies separately when traveling
Pack a day’s worth of wound care supplies into a carry-on bag when flying. This is important in the event that your airline loses your checked luggage. Imagine if all of your supplies are in that one missing bag. While the airline tries to locate your luggage and deliver it to you, you’ll have enough supplies to tide you over. Read more travel tips.
Bring Aquaphor or Vaseline to the dentist
Bring your own supply of Aquaphor or Vaseline to your next dental visit. Apply it to the inside and outside of you lips to prevent the dentist’s gloves and dental instruments from sticking to, shearing or irritating the skin. It even works wonders even during oral surgery! Read more about Ointments and Topicals.
Is Aquaphor too greasy for you?
- Add a teaspoon or two of water to a jar of Aquaphor and stir.
- It will turn a whitish color.
- It goes on thicker and doesn’t feel as greasy.
Dress her up!
Johnson & Johnson nursing pads are great for the diaper area. Remove the adhesive strip from the front and cover the sticky area with Vaseline. Then completely lubricate the entire inside pad area. They will not stick to wounds and are inexpensive enough to change frequently and throw away. These pads also make great padding for elbows, knees, shins, heels, etc.
Soften your Tubifast
If Tubifast feels too rough or harsh for fragile skin, wash and dry it before using. It comes out of the laundry feeling soft and comforting! Plus, it can be used as a tube top or as an undershirt for extra protection.
Plan ahead. Call your airline provider ahead of time to ask for assistance getting into the airport, through security and onto the plane. When you book your flight online, you may indicate that you have special needs. Also, check the TSA website for any changes in security measures.
Carry a doctor’s note. Dr. Kara Shah, a consultant for EB Nurse explains. “The power of a doctor’s note is that it can help you explain to anyone as to what your special needs are,” Dr. Shah adds. “Keep it brief. Tailor it to what you need it for: You’re on an airplane and you need to bring medicine and dressing supplies. Whenever you’re dealing with a skin disease that the general public doesn’t know about, it’s important to say something as simple as this skin condition doesn’t put other people at risk for infection and is not contagious.” Dr. Shah also recommends carrying a folder in your suitcase that contains more detailed medical information such as a list of medications, allergies, doctors and medical history. This information could come in handy in case of an emergency while you’re away from home.
Speak up. When you encounter assistants at the airport, tell them that you need help and explain how you need them to help you. When going through security, ask airport employees to be gentle on certain body parts and explain why this is necessary. This is also the perfect time to mention if you have had surgery recently or if you have a feeding tube.
Pack light. Pack the essentials and do so ahead of time. Label all bags with your name. Store liquids and gels in 3.4 ounce bottles or less in a clear, plastic zip-top bag.
Travel off-peak. Book very early or very late flights to avoid crowds. If possible, don’t travel on the days immediately before or after a holiday.
More Travel Tips
Do you find yourself confused about carry-on rules, specifically what you can and can’t take aboard an aircraft? The following should clarify the current requirements for our EB families.
The U.S. Transportation Security Association is enhancing security throughout the airport environment, especially in areas of staffing, canine patrols and proof of identify. There is good news for the EB community in the current atmosphere. A coalition of over 60 disability-related groups and organizations was established to help the TSA understand the needs and concerns of people with disabilities and medical conditions. They have established a program for screening persons with disabilities and their uniquely associated equipment, mobility aids and devices.
It’s a good idea to be prepared before you arrive at the airport so that you can move efficiently through the security process. Try to pack everything you can in your checked luggage. Have your airline boarding pass and government-issued photo identification available until you have passed through the security checkpoint.
Before the screening process begins, you may want to request a visual inspection of any medical supplies. This is your choice. A visual inspection should be requested before the screening process begins; otherwise, your medications and supplies will undergo the X-ray process. Explain at the outset if someone needs to be handled gently. Let the officer know if you are in pain, so that they will proceed with exceptional care and avoid sensitive areas.
Unless you have a disability, you are required to remove your shoes and put them on the conveyor belt. People with a disability, medical condition or prosthetic device do not have to remove their shoes. However, you’ll be subjected to additional screening, including visual and physical inspection, and explosive trace detection while your footwear is on your feet. If you decide to remove the shoes to avoid that, you will want to wear cushion-sole socks. and be extra careful walking on slippery surfaces.
Disability-related items allowed beyond the security checkpoint include, but are not limited to:
- Wheelchairs or scooters
- Tools for wheelchair or scooter disassembly/reassembly
- Crutches, canes or walkers
- Prosthetic devices and related tools
- Casts or support braces and appliances
- Service animals
- Diabetes-related medication, equipment and supplies
- Orthopedic shoes
- Assistive/adaptive equipment
- Augmentation devices
- Feeding tube supplies
- Medications and associated supplies
For those with bandages, if the area of a dressing sets off an alarm, a gentle, limited pat-down of the dressing area over the top of your clothing will be conducted.
On to the carry-on bag! The secret to getting through security in as painless a manner as possible is to de-clutter. Notify the screener that you are carrying supplies related to your, or your child’s, medical condition. If possible, have a note or card with you along with any supporting documentation, describing the form of EB, and listing items that may be necessary to your or your child’s health. It would be prudent to ensure that the name on medical prescriptions matches the name on the boarding pass, or explanations will be necessary.
Limit quantities to what you’ll need for the duration of the flight, and in an emergency if your baggage arrives late. Travel-on liquids, aerosols or gels (medications, eye drops, etc.) must be in containers sized three ounces or less, and packed into one transparent, plastic, quart-size zip-top bag. Have it packed in advance, and clearly label items so that they are easily identifiable (while the TSA does not require a label, they recommend having the label available to expedite the screening process). If you don’t require a visual inspection, remove the zip-top bag from your carry-on at the checkpoint, and place it in a bin or on the conveyor belt.
Make sure all containers in the zip-top are three ounces or less. You are not limited in the amount of larger-volume medical supplies or liquid nutritional items. However, these must be declared individually at checkpoint and are subject to additional screening. Separate those larger containers in the carry-on bag for easy access and inspection. Be prepared to show the larger-volume items to the officer. If you have an immediate need during screening, don’t hesitate to ask for a screening supervisor. In order to prevent contamination or damage to your medications and associated supplies, plan to display, handle and repack your own items during the visual inspection process.
As for sharp items, be judicious and take only what you must. A bandage change is unlikely, but if you are concerned about wound seepage, try to cut dressing materials in advance and avoid bringing sharp items. Knives are prohibited, except for plastic or round bladed butter knives. Safety razors, including disposable razors, are allowed in your carry-on. Scissors are prohibited, except for plastic or metal ones with a blunt tip, or if they have pointed tips, the blades must be shorter than four inches. Again, be prepared to present these to the screening officer.
You can call the TSA Contact Center to obtain additional information by phoning toll-free 866-289-9673, or have a look at the websites listed below.
GI and Nutrition
Infants and children with EB, in particular recessive dystrophic EB and junctional EB, are at high risk for gastrointestinal complications and poor nutrition. Anticipation of potential problems, frequent monitoring through the use of laboratory studies and clinical examination, and intervention before the development of overt complications are the best ways to ensure optimal gastrointestinal health and nutrition in children with EB. In addition, infants with EBS-pyloric atresia and JEB-pyloric atresia may develop severe vomiting and hyponatremic dehydration if this complication is not quickly diagnosed and treated appropriately.
Gastrointestinal complications include the following:
- recurrent blistering of the oropharynx, esophagus, intestines, and anus with resultant scarring and strictures, including microstomia, ankloglossia, esophageal strictures, and rectal strictures
- pain with eating (phagodynia) and with swallowing (dysphagia)
- refusal to eat
- poor dentition
- gastroesophageal reflux disease (GERD)
- intestinal malabsorption
- pain with defecation and constipation
- growth failure
Poor nutrition in children with EB results from a combination of factors, including intake of insufficient calories and nutrients to meet metabolic demands, which are increased due to chronic inflammation and wound healing, and loss of nutrients though open wounds. Use of high-calorie liquid nutritional supplements and specific micronutrient supplements are often recommended. Children at risk for severe malnutrition may require placement of a gastrostomy tube to facilitate supplemental feeding.
Complications of inadequate nutrition include the following:
- growth failure
- poor wound healing
- compromised function of the immune system and susceptibility to infection
- delayed puberty
- hypoproteinemia and hypoalbuminemia
- specific micronutrient deficiencies, including iron, zinc, and selenium