We’ve just met Evens, a 7-year old boy with an
extremely rare disease called Lamellar Ichthyosis. Scales and painful lesions
covering the entire body characterize this affliction. There is no known cure for
lamellar ichthyosis, but we’ve heard that some of his pain and discomfort can
be alleviated with prescribed moisturizers for the skin, and eye drops for his dry
eyes. Because this disease is particularly painful in hot climates, Evans is
tormented throughout South Africa’s hot summer season.
Our
friends at the Thohoyandou Victim Empowerment Program (TVEP) are trying to
assist Evens and have reached out to HFL for collaboration in finding
information concerning the disease. We are asking our followers to reach out to
your contacts in an effort to find out if there is anyone who can advise us as
to the best way to ease this young boy’s pain: specific moisturizers, specified
prescriptions etc. We are grateful for ‘social media’ and ask for your help to
‘spread the word’ and find relief for Evens.
Thank you. We’ll keep you posted on Evens progress.
