Guest guest Posted September 20, 2005 Report Share Posted September 20, 2005 Dear Marilette, Please could you be so kind to describe the medical background of Epidermolysis bullosa, and how to treat persons, suffering from this very severe genetic skin disease. (My PH background: Certified Pranic Healing) Thank you very much Namaste Gabriele ====================================================== Dear Gabrielle, Namaste. Thank you for your email. Medical Background: Alternative names - Junctional epidermolysis bullosa; Dystrophic epidermolysis bullosa; Hemidesmosomal epidermolysis bullosa; Weber-Cockayne syndrome Epidermolysis bullosa (EB) is a group of inherited bullous disorders characterized by blister formation in response to mechanical trauma. Historically, EB subtypes have been classified according to skin morphology. Recent discoveries of the molecular basis of EB have resulted in the development of new diagnostic tools, including prenatal testing. Based on a better understanding of the basement membrane zone (BMZ) and the genes responsible for its components, new treatments (eg, gene therapy) may provide solutions to the skin fragility found in patients with EB. There are four main types of epidermolysis bullosa: * Epidermolysis bullosa simplex * Junctional epidermolysis bullosa * Dystrophic epidermolysis bullosa * Hemidesmosomal epidermolysis bullosa Another rare type of epidermolysis bullosa, called epidermolysis bullosa acquisita, is an autoimmune disorder. This may be indistinguishable from another autoimmune skin disorder called mucous membrane pemphigoid. Depending on the type present, epidermolysis bullosa varies in severity from minor blistering of the skin to a lethal form involving other organs. The condition generally starts at birth or soon after that. Epidermolysis bullosa aquisita, however, usually appears in adults over age 50, although it has been reported in children. Also, mild cases of epidermolysis bullosa simplex may remain undiagnosed until adulthood. The classification of epidermolysis bullosa is complicated. Even within the main types mentioned, there are many different subtypes of this condition. For example, Weber-Cockayne is the most common form of epidermolysis bullosa simplex. This type involves blistering of the palms and soles and may include excessive sweating. All of the different types of epidermolysis bullosa are generally inherited. Therefore, having a family history of the disease, especially an affected parent, is a risk factor. The inheritance pattern may be dominant or recessive. A dominant form means that an offspring can inherit the gene or trait from one affected parent. The recessive form means that both parents must carry a gene and transmit that gene to the offspring in order for the infant or child to be affected. The recessive forms of epidermolysis bullosa tend to be more severe. The hallmark of these conditions is the formation of large, fluid-filled blisters that develop in response to minor trauma. Some infants may have large blisters at birth. Others start shortly after birth. Chafing (wearing away) of the skin, rubbing, or even increased room temperature may cause blisters to form. In the severe forms, scarring after blister formation may cause deformities, fusion of the fingers and toes, and contracture deformities (for example, at the fingers, elbows and knees). If the mouth and esophagus are involved, blistering and scarring lead to feeding and swallowing difficulties. Secondary infection is common. Symptoms depend on the type of epidermolysis bullosa, but can include: * Blistering of the skin as a result of minor trauma or temperature change * Blistering present at birth * Nail loss or deformed nails * Blistering in or around the mouth and throat, causing feeding difficulty or swallowing difficulty * Blistering around the eyes and nose * A hoarse cry, cough, or other respiratory difficulties * Dental abnormalities such as tooth decay * Alopecia (hair loss) * Milia (tiny white bumps or pimples) For epidermolysis bullosa acquisita, there is an association with Crohn's disease (an inflammatory bowel disease) and, possibly, lupus. Symptoms of these conditions may be present, therefore, in adults who present with this type of epidermolysis bullosa. The goal of medical treatment is to prevent the formation of blisters and subsequent complications. The intensity of care depends upon the severity of the disease. Recommendations often include measures to avoid skin trauma and to avoid high environmental temperatures. To prevent infection, excellent skin care is required, especially if any blistered areas become crusted or denuded (exposed or raw). Follow the instructions of your health care provider closely. Recommendations might include regular whirlpool therapy and application of topical antibiotics to these wound-like areas. Your health care provider will let you know if a bandage or dressing is required, and what type. For difficulty in swallowing and/or if candida is present in the mouth or esophagus, medication for that secondary infection would be prescribed. Good dental hygiene is very important, including regular dental visits. It is best to be followed by a dentist with experience treating those with epidermolysis bullosa. Proper nutrition is also important. When skin injury is extensive, increased calorie and protein intake may be necessary to help recovery. Work closely with a nutritionist. When blisters or complications are present in the mouth or esophagus, hard or brittle foods (such as pretzles, nuts, and chips) should be avoided. Eating soft foods can help prevent worsening of these lesions. Working with a physical therapist can help maintain the range of motion of involved joint areas 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 as well. Such surgeries include dilation of the esophagus if a stricture (narrowing) is present, repair of hand deformities, and removal of squamous cell carcinoma lesions if they develop. Other treatments under investigation for epidermolysis bullosa include protein and gene therapy. Epidermolysis bullosa acquisita may be treated with oral steroids and medication that suppresses the immune system. These may, however, increase the risk of secondary infection, particularly the latter drug category. Studies using interferon are also underway. The outcome depends on the severity of the illness. Mild forms of epidermolysis bullosa improve with age. Scarring from several types of epidermolysis bullosa can restrict mobility significantly and, therefore, impair daily activities. Lethal forms of the epidermolysis bullosa have a very high mortality rate. Complications * Infection, including sepsis * Esophageal stricture * Periodontal disease * Loss of function of hands and feet * Eye disorders, even blindness * Muscular dystrophy * Severe malnutrition secondary to feeding difficulty, leading to failure to thrive * Anemia * Squamous cell skin cancer -- if someone with epidermolysis bullosa survives childhood, metastatic squamous cell cancer of the skin is the most common cause of death. This skin cancer occurs in those with recessively inherited dystrophic epidermolysis bullosa. Those with epidermolysis bullosa often develop this skin cancer between the ages of 15 and 35. In addition, the skin cancer can occur anywhere on the skin. In other words, unlike the general public, it is not more likely to happen in sun-exposed areas. * Death -- death rate is as high as 87% in the first year of life for infants with the lethal form of junctional epidermolysis bullosa. On the other hand, dominantly inherited simplex and dystrophic epidermolysis bullosa, and mild forms of junctional epidermolysis bullosa may not lessen life expectancy at all. If your infant exhibits any blistering shortly after birth call your health care provider. If you have a family history of epidermolysis bullosa, further interaction with your health care provider or a genetic counselor may be appropriate. Prevention Genetic counseling is recommended for prospective parents with a family history of any form of epidermolysis bullosa. During pregnancy, chorionic villus sampling to test the fetus is available. For couples at high risk of having an offspring with epidermolysis bullosa, the test can be done as early as week 8-10 of the pregnancy. Speak with your obstetrician and genetic counselor. To prevent skin trauma and blistering, it may help to wear padding around trauma-prone areas like elbows, knees, ankles, and buttocks. Contact sports should be avoided. Sources - : M Peter Marinkovich, MD, Jacqueline A. Hart, M.D., Senior Medical Editor, A.D.A.M., Inc. Previously reviewed by Jeffrey Drayer, M.D. Pranic Healing: Sources: Advanced Pranic Healing, Pranic Psychotherapy both by Master Choa Kok Sui. This is for patients 3 years old to 65 years old. If the patient is below 3 years old or over 65 years old, just use white prana. 1. Invoke and scan before, during and after *Teach patient how to do proper pranic breathing. Ask patient to do 12 cycles before start of treatment and to continue pranic breathing during treatment. 2. General sweeping several times with LWG. 3. Localized thorough sweeping and energizing on the entire head, the ajna chakra, crown chakra, forehead chakra and throat chakra using LEV or EV. 4. Localized thorough sweeping on the front and back heart chakra alternately with LWG and ordinary LWV. Energize through the back heart chakra with LWG then with more of ordinary LWV. 5. Localized thorough sweeping on the affected areas alternately with LWG and LWO. If the affected areas are near the heart, or on the head do not use O; just use LWG and ordinary LWV alternately for cleansing. If the area in not on the head or near the heart or spleen - Energize the affected part(s) with LWG then LWB to soothe pain then with LWR then gold. OR If the affected area in on the head, near the heart or spleen - Energize the affected part(s) with LWG then LWB then ordinary LWV then with gold. 6. Localized thorough sweeping on the front, sides and back lungs. Energize through the back of the lungs with LWG then LWO then LWR. Point your fingers away from the patient's head when energizing with O. 7. Localized thorough sweeping on the basic chakra alternately with LWG and LWO. Energize with LWR. 8. Localized thorough sweeping on the arms and legs with emphasis on their minor chakras alternately with LWG and LWO. Energize the minor chakras of the arms and legs with LWR 9. Localized thorough sweeping and energizing on the front and back solar plexus chakra. Energize the solar plexus chakra with LWG then LWO. Apply more localized sweeping. 10. Localized thorough sweeping on the front and back spleen chakra using LWG. Energize the spleen chakra with LWG then with ordinary LWV. This has to be done with caution. 11. Localized thorough sweeping on the kidneys alternately with LWG and LWO. Energize them with LWR. 12. Localized thorough sweeping on the meng mein chakra. 13. Localized thorough sweeping on the sex chakra, navel chakra and the lower abdominal area. Energize the navel and sex chakras with LWR. 14. Stabilize and release projected pranic energy. 15. Repeat treatment 3 times per week. For patient: 1. Provided there are no other health conditions that will prevent the proper practice for the meditation, practice of the Meditation on Twin Hearts with both feet in a basin with water and salt regularly especially after each pranic healing treatment. The practice promotes the assimilation of healing energy, refines and raises the energy level, promoting good health. This meditation generates tremendous divine energy needed to treat ailments with genetic components. If the patient is unable to practice the meditation due to age or health, the patient's family and friends may form a group to practice the Meditation as a group regularly and include the patient's healing in the MTH's blessing. 2. Practice proper pranic breathing (6-3-6-3) for 12 cycles upon waking every day and during the day especially when experiencing stress. 3. Tithe regularly for healing. 4. Follow doctor's advice. Love, Marilette Pranic Healing is not intended to replace orthodox medicine, but rather to complement it. If symptoms persist or the ailment is severe, please consult immediately a medical doctor and a Certified Pranic Healer . ~ Master Choa Kok Sui Miracles do not happen in contradiction to nature, but only to that which is known to us in nature. ~ St. Augustine Ask or read the uptodate pranic healing protocols by joining the group through http://health./ For the latest International Information regarding GMCKS Pranic Healing, visit http://www.pranichealing.org. Mail - PC Magazine Editors' Choice 2005 Quote Link to comment Share on other sites More sharing options...
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