1. WHAT IS THE BEST TREATMENT PLAN THAT YOU HAVE ENCOUNTERED SO FAR? The treatment plan has many aspects to it. The two most important aspects to treatment that can be controlled are wound healing and nutrition. Presently, the only treatment plan involves using non adherent bandages (can be very expensive) to promote healing of the wounds that patients with EB suffer with. Before bandaging, any raised, fluid filled blisters must be lanced and drained, otherwise the blisters can grow bigger. On top of bandaging to promote healing of the wounds, many patients must bandage over non-wounded skin in order to protect their skin from further damage. Even with this treatment, the skin reblisters so easily it is a constant cycle of wounding and healing. Patients are prone to infection since the main protection against infection is our skin. It is the largest organ of the body.
2. HOW DO YOU TREAT BLISTERING IN THE ESOPHAGUS? Blistering in the esophagus is difficult to treat. There isn’t a way to necessarily treat the blistering……but, the blistering can cause scar tissue to develop causing narrowing of the esophagus (called a stricture) which makes swallowing very difficult. To treat the stricture, a surgical procedure known as an esophageal dilatation is done under anesthesia to try to reopen the esophagus. Patients may have many of these in their lifetime. To try to minimize esophageal blistering, EB patients should stay on a soft food diet. This is easier said than done, especially with children.
3. HOW MUCH TIME EACH DAY IS SPENT ON BANDAGING AND CHANGES THE BANDAGES? Bandaging can take anywhere from a few minutes (in the most mild of cases) to a few hours 3-4 (in some of our most severe cases)
4. DO ALL SUFFERERS OF EB HAVE FLUID FILLED BLISTERS? Yes. This is the common factor among the types. Some people may be more prone to them depending on type….some may see the skin sheer off easily and may also get fluid filled blisters
5. WHAT ARE MOST OF THE COMMON SYMPTOMS THAT EB PATIENTS SUFFER FROM? Pain, itching, fluid filled blisters and fatigue.
6. WHAT IS THE LIFE EXPECTANCY OF MOST EB PATIENTS? This will depend on the type of EB. In the worst cases, maybe into their teens…..in the more severe types the average is into their 20s.
7. WHEN CAN EPIDERMOLYSIS BULLOSA BE DIAGNOSED? EB is usually diagnosed at birth or soon thereafter as blistering and skin missing are usually the first indications.
8. WHAT ARE THE DIFFERENT TYPES OF EPIDERMOLYSIS BULLOSA? There are 3 types of EB and many subtypes. The 3 types are Simplex, Dystrophic and Junctional. This link in the following answer describes them. The difference in the 3 dependent on where the “split” in the skin occurs.
9. WHAT IS DIFFERENT ABOUT EACH TYPE OF EB? The difference is where the split in the skin occurs. Each of these types is dependent on mutations in the DNA. While there are complications that can differ between the types, there can be overlap. Some of this is dictated by the mutation as well. In general, as Simplex patients gets older, their EB may not worsen…unlike junctional and dystrophic. 10. WHAT ARE COMMON SYMPTOMS AND OTHER DISEASES THAT SPRING FORM EB? Some of the known issues from EB are anemia, cavities, malnutrition, developmental delay, stunted growth, immobility, contractures, webbing of fingers, kidney disorders and heart disorders. This list seems to be growing all the time as more is learned and documented about the disorder.
11. WHAT CAN BE DONE TO ENSURE THAT THERE IS A CURE? In order to ensure a cure…….research has to be done…..because it is a genetic disorder, there needs to be research on fixing the mutation that causes it. Then it will be cured. In order for this to happen there needs to be funding of research as the cost of this research is enormous. Presently there is research being done world wide….much more than 10 years ago. But most of this research is being done on a treatment. Hopefully something will lead us to a cure as well.
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