The Worst Disease You Never Heard Of

February 28th is being celebrated as Rare Disease Day worldwide.

The Jamaican Blogs™ is using this opportunity to share the story of one Loving Jamaican mother whose son is afflicted with a very rare and devastating disease.

Rare diseases, as the name suggests are usually so uncommon that the average person may never come across one or be privy to what living with one of these conditions is like.

Sadly, there are approximately 7000 diseases that are considered to be rare according to the website rarediseases.org.

10 months ago, a mother here in Kingston gave birth to a baby born with a rare skin disease called Epidermolysis Bullosa. EB, aptly termed ‘the worst disease you never heard of’ causes the skin to be so fragile that it manifests in blisters and causes painful skin erosion from the slightest friction. 

An EB baby’s skin is so delicate that it is likened to the wings of a butterfly, prompting the nickname Butterfly Skin. 1 in 50,000 children in the States are born with this disease.

Shauna-gay Mitchell, Baby Marley’s mother, recalls that it didn’t take long after delivery to find out that there was something wrong with her baby “I noticed a big red patch on his right leg…there was skin missing from his knee all the way down to his ankle and of course in shock, I immediately started asking what happened to his skin.”

The staff at Victoria Jubilee hospital had seen this disorder before in a baby who eventually passed and thus warned Shauna-gay that the prognosis for EB babies was not good. Currently, there is no cure and the most effective treatment so far is through a bone marrow transplant. 

Many babies born with severe EB live a very difficult life wrought with pain and eventually die in infancy. Marley’s parents refused to accept this as a reality for their baby and scoured the internet for information on the condition.

They found the most comprehensive and helpful tips from DEBRA (http://debra.org) and learned that as horrific as this disorder can be, research is being done to try to improve the lives of people living with it.

Marley leads a much more difficult life than other babies. He was not able to breastfeed as even that would cause trauma to the mouth and now has to be fed from a bottle without the nipple being inserted into his mouth. 

He relies on proper wound care management and is constantly in need of wound care supplies to keep him bandaged up. His parents work as a team to give him a special saline soak bath every other day and re-bandage his wounds.

“A typical bath and bandage session runs for about 2 hours and requires at least 2 people to get it all done safely. Scissors and needles etc are used and everything has to be extremely sanitary.” Marley likely will miss out on normal activities like running and jumping but already sports a warrior-like personality.

Shauna-gay, who has two older EB -free children now has her sights set on starting a charity to help anyone else with this condition. “We know that without proper wound care, any baby born with EB has very slim chances and it pains me to think of a lower income family having to struggle though the horrors of EB by themselves.”

Plans are being explored to work with DEBRA International to set up a national chapter here so that with their expertise support can be provided for other families.
Regional ambassador at DEBRA International, Gena Brumitt added that “The Caribbean is a special area of interest for me in my role with DI’s EB Without Borders. Most of my EBWB colleagues are in Europe. I have made some progress with patients and patient families in Trinidad & Tobago so I was delighted to hear from Marley’s Mom”

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