Eating corn at a Chili’s restaurant is just one of the many uphill battles Sheandrea Henley has faced due to a rare disease.

“She said, ‘I can’t bite this corn,’” said Vermia Jackson, remembering a meal with her daughter earlier this year. “Her lips had gotten so small and so tight she couldn’t even open her mouth wide enough to bite the corn.”

Scleroderma hardens a person’s skin and organs, although its symptoms vary case by case. For Henley, who was diagnosed with the autoimmune disease in 2010, it has led to ulcerations on her hands and difficulty breathing. Henley says her skin can be so tight it causes joint pain and prevents her from closing her hands completely.

But the Memphis resident says she has seen a turnaround since getting a scleroderma stem cell transplant at Baptist Memorial Hospital-Memphis in May. She’s the first adult to receive that type of transplant in the Mid-South region, according to Baptist.

“They told me it was risky, but to me, everything is risky,” Henley said.

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Henley's skin is faring better post-transplant. Her skin can now be pinched and lifted, when it used to be too tight to do so, according to Baptist Medical Group's Dr. Muhammad Raza, who provided care for Henley up to and after the transplant.

Raza said this is the first time a scleroderma treatment has been shown to have meaningful quality-of-life effects.

“I think it is a game-changing treatment for scleroderma patients,” Raza said. “This is historically a very, very tough disease to treat.”

No options until stem cell transplant

Henley has had trouble gripping, opening bottle caps and bumping her hands into something without skin damage.

Beyond the skin tightness are lung issues. Henley started having breathing problems in 12th grade, Jackson said, and she has scar tissue on her lungs.

“My lungs are only functioning at 20%,” Henley said, adding that she is in the evaluation stages of getting a lung transplant. “I can’t do much because I can’t stop coughing.”

Henley took medication to keep her symptoms under control, but they were getting more severe and there was no surefire treatment option available for her scleroderma.

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"Her skin was getting worse, her lung issues were getting worse despite being on different kinds of treatments,” Raza said.

A breakthrough happened when Baptist offered to give her the stem cell transplant. Stem cells produced by the bone marrow can mature into new blood cells, Baptist says.

It was a new approach to treating the disease, as Henley pointed out stem cell transplants have traditionally been used to treat cancer. Promising results of a clinical trial show scleroderma patients who received one were less likely to die from the disease compared with those who received the chemotherapy drug cyclophosphamide, per a study published by the New England Journal of Medicine.

Henley’s lung doctor, rheumatologist and transplant doctor all talked her through the procedure and described what would happen, along with potential risks such as infections. Health insurance issues delayed the process until this year, Henley said.

Dampening the immune system

Henley accepted the transplant, which aimed to “dampen” her overactive immune system caused by the disease, Raza said.

For the transplant, doctors collect a patient's stem cells, and then chemotherapy is administered to kill bad cells in the patient. Then the stem cells are transplanted back into the patient to make new cells and rebuild the immune system.

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"The beauty of the stem cell transplant is you do a bulk of treatment up front, and that is it after 30 days,” Raza said. “You expect patients to recover and they don’t have to do any more treatment.”

Henley stayed in the hospital until June after going through chemotherapy, radiation and gaining her white and red blood cells back. She said she was able to get through the procedure by thinking back to when her mother was fighting breast cancer with several rounds of chemotherapy and radiation, a battle Jackson ultimately won.

“That’s how I was able to go through my chemo,” Henley said. “That’s why I was able to deal with it so easy.”

Jackson said she tried to spur Henley’s appetite, lost following the chemotherapy, with methods she used during her own chemotherapy rounds. Fruits and spicy chicken at Popeyes, where Jackson works, did the trick.

“I believe that was the first time she actually started eating again,” Jackson said.

Now, eating — and virtually everything else — is easier for Henley.

Max Garland covers FedEx, logistics and health care for The Commercial Appeal. Reach him at max.garland@commercialappeal.com or 901-529-2651 and on Twitter @MaxGarlandTypes.