Epidermolysis Bullosa is in Palestine affected our Kids. we have around 7 cases in Gaza strip most of them are kids under 7 years old. As you see in the Note below in the Treatment section, the only way for the treatment is to Prevent blisters forming and complications by using topical antibiotics and hygienic procedures.
another thing could be help is teach their Parents what kind of Food should they eat, what kind of environment should they stay….etc
My call is I want from all my friends If they know any doctors, or associations could help those kids with the Treatment I mentioned above in both ways (Medical and Nutritional ).
Epidermolysis bullosa is a group of inherited disorders in which skin blisters develop in response to minor injury.
There are four main types of epidermolysis bullosa:
- Dystrophic epidermolysis bullosa
- Epidermolysis bullosa simplex
- Hemidesmosomal epidermolysis bullosa
- Junctional epidermolysis bullosa
Symptoms depend on the type of epidermolysis bullosa, but can include:
- Alopecia (hair loss)
- Blisters aound the eyes and nose
- Blisters in or around the mouth and throat, causing feeding problems or swallowing difficulty
- Blisters on the skin as a result of minor injury or temperature change
- Blistering that is present at birth
- Dental problems such as tooth decay
- Hoarse cry, cough, or other breathing problems
- Milia (tiny white bumps or pimples)
- Nail loss or deformed nails
The goal of treatment is to prevent blisters from forming and complications. How much treatment is needed depends on how severe the disease is. Recommendations often include avoiding skin damage (trauma) and hot environments.
- To prevent infection take very good care of the skin, especially if any blistered areas become crusted or exposed (raw). Follow your health care provider’s instructions closely. You might need regular whirlpool therapy and to apply antibiotic ointments to wound-like areas. Your health care provider will let you know if you need a bandage or dressing, and if so, what type to use.
- For swallowing difficulties, your may need to use oral steroids for short periods of time. Long-term steroids for epidermolysis bullosa is generally not recommended. If you also have candida in the mouth or esophagus, you will also need to take medication for that infection.
- Good dental hygiene is very important, including regular dental visits. It is best to see a dentist who has experience treating people with epidermolysis bullosa.
- Proper nutrition is also important. When you have a lot of skin injury, you may need extra calories and protein to help you recover. Work closely with a nutritionist. If you have blisters or complications in the mouth or esophagus, avoid eating hard or brittle foods such as pretzels, nuts, and chips. Eating soft foods can help prevent making the sores worse.
- Working with a physical therapist can help you keep the full range of motion in the joints and minimize contractures.
Skin grafting for denuded or ulcerated areas of the skin may be necessary. Other surgical procedures for complications of epidermolysis bullosa might be recommended. Such surgeries include:
- Dilation of the esophagus if there is a narrowing (stricture)
- Repair of hand deformities
- Removal of of any squamous cell carcinoma that develops
(Facebook / 15.07.2012)