Young Eli Henshaw is fighting for his life, and has been since the day he was born. His rare and painful skin condition causes his skin to tear and blister, making him prone to serious complications.

What is epidermolysis bullosa (EB)?

Eli Henshaw’s Story

Elijah or Eli Henshaw was born on May 4, 2017 with epidermolysis bullosa, a rare skin condition that makes his skin exceptionally fragile, and causes it to easily shear off, blister, and tear like tissue paper even at slight touch. Many of his days are said to be filled with crying, especially now that he’s over a year old and is able to walk and move around.

According to his parents Jaycee and Jonathon Henshaw, sometimes his skin just falls off when he walks. They also need to keep popping the blisters that develop in his skin, and after which they need to cover up the blister wounds to assure that he is protected from potential infections.

This is not only challenging for the family, but expensive as well. For instance, one of the types of bandages they use to cover up his wounds costs $180 per box, each box containing only 15 bandages. As such, the family created a GoFundMe page to share his story and to also help them with the continuous medical bills for Eli.

That said, the Arizona family remains optimistic despite the challenges. They even have a Facebook page where they share Eli’s brave story to raise awareness for the rare skin condition. While their quest to raise awareness happens the whole year round, Eli’s story is even more relevant this month as Oct. 25 to 31 is actually National EB Awareness Week.

Epidermolysis Bullosa

Epidermolysis Bullosa is group of rare skin conditions that cause fragile and blistering skin, as a response to minor injuries, heat, scratching, rubbing, or even adhesive tape. In severe cases, the blistering may even occur inside the body such as inside the mouth or in the stomach lining. It is a genetic disorder that may be inherited from one or both parents, or caused by a genetic mutation in the patient that can then be passed on.

Some of its common symptoms may include nails that are either thick or nails that do not form at all, thick skin on the palms or soles of the feet, blisters inside the mouth and throat, scalp blistering and hair loss, tiny white bumps on the skin, thin appearing skin, dental problems, itchy skin, and difficulty swallowing.

Because the condition involves the tearing of the skin, some possible complications to EB include sepsis, fusing of fingers, and infections. Constipation, dental problems, skin cancer, nutrition problems, and even death are also some of its severe complications.

The rare condition often shows up during infancy or childhood, but some begin to develop symptoms in adolescence or early adulthood. In mild cases, the person with EB may see his or her symptoms to improve over time.

So far, there is no cure for EB. Management and care entails treating the blisters and preventing new ones from erupting. It's also important to keep the patient's skin moist, to dress them up in soft clothing, to prevent scratching, to keep the environment cool, and to handle the child with extra care.

That said, the child should still be encouraged to be active in activities that do not cause skin injuries such as swimming. Those with mild EB may protect their skin while engaging in outdoor activities by wearing pants and clothing with sleeves. 

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