Living in agony: Daily tasks excruciating for Staten Island teen with rare disea…


John Hudson Dilgen, who suffers from a uncommon pores and skin illness, is in want a WC with a particular tub that may assist ease his ache and discomfort. (Dilgen household photograph) 

STATEN ISLAND, N.Y. — Duties that so many people take without any consideration, like washing our face and palms or having a shower or tub, present excruciating ache for John Hudson Dilgen, a Staten Island teen with a uncommon pores and skin illness.

An accessible new toilet with a particular hydrotherapy tub might assist ease his ache.

Fourteen-yr-previous John Hudson, nicknamed JH, of Tottenville, has lived with epidermolysys bullosa (EB) since he was born. Actions that most individuals take without any consideration, like strolling and opening a door, are actions that John Hudson struggles with each day.

“I’ve a bit of my physique lacking referred to as collagen VII,” stated John. “What principally occurs to my pores and skin is… it is so fragile that the slightest factor may cause a blister, tear or wound that impacts a number of your day. It is actually exhausting.”

Having EB has stored John at house more often than not — the ninth-grader is unable to attend highschool because of the ache. He’s being residence-schooled.

Within the accompanying video, John begins off his day by taking a shower. His tub is 2 hours lengthy — he has to take one in a bleach and water combination each different day to maintain his wounds, which cowl most of his physique, from getting a lethal an infection, based on his dad, John, who seems within the video.

Each time he takes a shower, extra of his pores and skin is exfoliated, typically leaving him crying out in excruciating ache.

“The nurses should cleanse his pores and skin, pop any blisters, deal with the injuries, dry him off after which re-bandage him just about from head to toe,” John’s mom, Faye, defined. The bandages alone value the household about $10,000 a month.

Sarcastically, Faye Dilgen works as a bodily therapist with NYU Langone Medical Middle, and was capable of observe sufferers who benefited from hydrotherapy.

The household did some analysis, and located that a particular hydrotherapy tub may make the day by day ordeal a bit simpler and fewer painful for John.

“First we want to buy a Microsilk Tub for JH which permits mild debridement of his pores and skin whereas he bathes,” his mom stated.

“JH can also be in want a a bigger toilet which is extra accessible,” she added.

“Over the previous few years, as his illness has progressed, his mobility has turn out to be worse, as has his ache, wounds, infections, and anemia. This has meant extra ache drugs, antibiotics, journeys to…



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