Earlier I had mentioned about the little “purple baby” called Srey Ya, laying on a mat on the hospital floor and whom we had been asked to accept into our care. A lot of people have since been asking after her. So, the good news is that we have now been granted permanent guardianship of her! So happy and relieved about that!
The bad news – we took her directly to a skin specialist and he knew what her condition was immediately although he has only seen one case of it before here in Cambodia. She has Epidermolysis bullosa (EB)
What is Epidermolysis bullosa?
“Epidermolysis bullosa is a group of rare diseases that cause the skin to blister. The blisters may appear in response to minor injury, heat, or friction from rubbing, scratching or adhesive tape. In severe cases, the blisters may occur inside the body, such as the lining of the mouth or intestines.
Most types of epidermolysis bullosa are inherited. Epidermolysis bullosa has no cure, though mild forms may improve with age. Treatment focuses on addressing the symptoms — such as infection and itching — and preventing pain and wounds. Severe forms may cause serious complications and can be fatal”.
In Sre Ya’s case a biopsy has been taken and will take two weeks to come back with results. The results should give us a clue as to the likely severity and future prognosis. Right now we know that she has experienced blistering all over her body, inside her mouth and oesophagus.
The first appointment in the clinic took 2 nurses over 5 hours, cleaning her and applying special dressings and bandages. Her sores/wounds were deeply infected and she had a temperature from the infection so she was immediately prescribed antibiotics and paracetamols. Srey Ya is now a lot more comfortable and is getting a lot of TLC from us, our KV nurse (temporarily) and a nanny. We are not posting any photos until she is in a brighter condition but we will endeavour to keep you updated here.
Sunny & Karen