“When you can’t feel your legs, you don’t ever really think about them,” says Joe Mueller. “It’s like they’re not even there.”

Like many who have spina bifida, Mueller finds that remembering to check his skin for injuries each day is challenging. As a teen, Mueller even required surgery for a wound that had gone unnoticed. But it was the experience of another person that prompted Mueller to make some changes. “My foster sister lost a leg because of a wound that became infected,” Mueller remembers. “That was a big wake-up call for me.”

Today, with help from his wife Barb, Mueller checks his skin daily for any sign of injury. “I haven’t had any issues so far as an adult,” he says. “I’ve started taking better care of myself.”

Low Sensation Equals High Risks

For people who have spina bifida, spinal-cord injuries, diabetes and other disabilities that affect sensation, even minor injuries can be dangerous. That’s because the pain sensation—which usually alerts the body to injuries immediately, before they become more serious—is not always felt or recognized as an injury.

“Someone who can’t feel their feet might not detect a wound until there’s infected drainage or odor,” says Jill Gettings, M.D., a physical medicine and rehabilitation specialist at New Brighton-based Gillette Lifetime Specialty Healthcare. “Some wounds become so severe that they require surgery or amputation once identified.”

Lack of protective sensation also places people at greater risk of experiencing injuries in the first place. Anything from scalding hot bath water to braces that have been outgrown might go unnoticed, leading to burns, sores and infections. Edema (swelling) can also cause pressure in an otherwise properly fitting brace or pair of shoes.

Experience Leads to Change

After witnessing such injuries first-hand, physical therapist Laura Pizer Gueron says she thought health-care providers could do more to educate and care for patients with sensation problems. “I saw people in their 20s who needed amputations because of injuries that they might have prevented or, at least, noticed sooner,” she says.

After months of research, Gueron and a team of providers developed new education practices aimed at preventing wounds in at-risk patients. The strategies target patients from birth through adulthood.

For babies and children, education involves parents and focuses on helping children develop awareness of their lower limbs. “We learned of research showing that when children with spina bifida draw themselves, they often leave out their legs,” Gueron says. “We realized that encouraging lower-body awareness was an important part of encouraging self-care.”

Prevention Begins at Home

Because providers only see patients periodically, diligent self-care by patients of all ages and their caregivers is vital. “Daily skin inspections and prompt medical attention could virtually eliminate the more severe wounds and infections we see in patients with sensation problems,” Dr. Gettings says.

That’s a message the Muellers — who have three adopted sons with special needs — take seriously. “Skin checks happen every day at our house,” Joe says. “We’ve also taught the boys different ways to prevent injuries. I’ve seen how dangerous it can be if you don’t take good care of yourself.”

Wound Prevention Tips

Serious wounds and infections are preventable with careful hygiene and daily skin inspections. Gillette staff offer the following prevention tips.

Daily Skin Checks
Every day, you should:
Inspect your thighs, buttocks, the tops and bottoms of your feet, and the areas between your toes (use a mirror to look at the places that you can’t see on your own)
Look for redness, blisters, sores, cracks, peeling and swelling
Feel your skin for hot areas
Report any problems to your doctor immediately

Careful Hygiene
Keep your feet clean and healthy by:
Washing daily using a mild soap and warm (not hot) water
Drying thoroughly with a soft towel
Trimming toenails straight across and smoothing them with an emery board or file
Treating calluses, corns and other problems only after consulting with a foot-care specialist

Good-Quality Shoes
When selecting shoes, consider the:
Fit: Shoes that fit properly offer cushioned support and never need “breaking in”
Material: Leather shoes breathe better and offer more protection than shoes made of vinyl or plastic, which don’t stretch and can trap moisture and odor
Type and Shape: Shoes with high heels or pointed toes can cause skin to break down. Open-toed shoes or sandals don’t offer protection from injuries
Brand: Custom shoes with deep toe boxes help if you have such problems as hammertoes or bunions

If you’re unable to examine or care for your feet by yourself, ask someone else to help you.

For more information about lower-body skin care, or to make an appointment, contact Gillette Lifetime Specialty Healthcare, 651-636-9443 or visit www.gillettechildrens.org.