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'I couldn't eat, couldn't drink': Edmonton woman opens up about painful disease

Health Canada recently approved a drug to treat GVHD, a disease Jyoshna Govender has lived with since 2012.

Jyoshna Govender, before being diagnosed with leukemia and then graft-versus-host disease (GVHD).

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Jyoshna Govender, before being diagnosed with leukemia and then graft-versus-host disease (GVHD).

An Edmonton woman has opened up about her experience with a painful disease that doctors are only now learning how to treat.

Jyoshna Govender received a stem cell transplant from her younger sister in 2012 — as a last-ditch treatment for leukemia after two different drugs had failed to work on her — and wound up with graft-versus-host disease (GVHD), which occurs when immune cells of the stem cell donor mistakenly attack the patient’s normal tissues.

“It was my skin, my eyes, my mouth lining, and basically my guts all the way through internally — those were all stripped. My eyes were very dry, I didn’t have any tears — I still don’t have any tears,” the 39-year-old said.

Her skin also started to die, turning blue as it became itchy, sensitive and covered in liver spots.

By the time her disease had been diagnosed, it was too late — the condition had already become chronic.

It took years of trying various medications, most steroid-based, before she found one that got her organs under control and allowed her to manage her symptoms.

Today, Govender is cancer-free but still can’t go outside in extreme cold weather, and has trouble in the summer because her eyes can’t flush out allergens.

“I would never wish this upon nobody, ever, in my life, because it’s not something easy to deal with,” she said. “I went through quite the struggle, but for the position I am in now, I feel very grateful for it.”

With rest, dietary changes, spirituality and care and support from her husband Suran, Govender said she has finally been able to return to some sense of normalcy and talk about her experience.

Lymphoma Canada CEO Robin Markowitz said GVHD can present in a variety of ways, ranging from annoying to excruciating.

She said it’s the top cause of death in allogeneic transplant patients, though their deaths will often be attributed to cancer rather than GVHD.

“For people that have severe cases, it’s incapacitating. They can’t work, they can’t function, their everyday life is miserable. It’s very painful,” Markowitz said.

In October, Health Canada approved a new immunotherapy drug called Imbruvica to help manage symptoms of chronic GVHD.

Markowitz said the recent development is huge for cancer patients who have received allogeneic stem cell transplants.

“This is a big breakthrough for them,” she said.

The drug will not help Govender at this stage, but she said she’s happy that it might prevent people from going through struggles like hers in the future.

“I am quite excited for future patients that may need this,” she said.

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