URGENT: need Mepilex bandages for a girl in Cuba with Epidermolydud Bullosa, a horrible and painful condition.
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“Hello Everyone,
I’m new to the group but have dealt with NJTT for several years. I’m here now asking if anyone can help me out. Long story short…. I retired over 4 years ago and began travelling frequently to Cuba. In my travels I came across a lady working at a resort who had a grand daughter with a rare genetic skin disorder known as epidermolysis bullosa (EB). This has got to be the worst disease there is. The skin is so fragile that it separates from the flesh with the slightest friction or even warm temperatures will cause blistering which will cause the skin to separate. There is no cure and all that can be done is treatment for pain, and treat and bandage the lesions. The mother of this child and myself reached out to contact as many families in Cuba with this extremely rare disease as possible. We travelled all around the Eastern half of Cuba contacting and visiting other families with EB. We shared bandages and installed heated working showers in almost all the homes (9 or 10) as hygiene is of the utmost importance with this skin disorder. Over the years I was supplying them with as much bandaging and medication as I possibly could. Now with the isolation brought on by covid, and the loss of contact with an Australian Dr. who was supplying me with bandages, these poor children (young adults) are without any wound dressings or topical antibiotics. The conditions in Cuba are very bad because of covid, the loss of income because most of Cuba’s income is in tourism. Many people hold prescriptions for medications but can’t fill them because there are no supplies.
These bandages are a special non-adhesive type (adhesive types can not be used as they would pull the skin off when removed.) and they are very expensive. If anyone has any bandages to donate or any ideas on how to acquire them at a reasonable cost I would be eternally great full. Any non-adhesive type bandage is helpful but the best types are the “Mepilex” or similar type – a spongy silicone.
These people are in desperate need of these bandages and if anyone can help with getting them I will get them to Cuba one way or another.
Thank you in advance and thank you for your time and interest.”
