Kensington woman shares her story as Acromegaly Awareness Day draws near

Local News

"I have acromegaly, but acromegaly doesn't have me," said Jenifer Lewis.

KENSINGTON, Ohio (WKBN) – Pro-wrestling legend Andre the Giant was 7 feet tall and weighed 500 pounds. He had acromegaly, which caused him to grow so big. It’s a very rare condition, which has also affected a Columbiana County woman.

“I look at myself, I look more manly than I do a woman and it is embarrassment,” said Jenifer Lewis, of Kensington.

Lewis was diagnosed with acromegaly in 2011. In the last almost decade, she’s made it her mission to no longer see it as something holding her back.

“Learning the strength within myself to fight this and to make sure it doesn’t grab a hold of me and take me down,” she said.

Acromegaly is a hormonal disorder that develops when your pituitary gland produces too much of the growth hormone. When this happens, your bones increase in size, including those of your hands, feet and face.

“There isn’t a joint on me that doesn’t hurt, from my neck clear down to my toes,” Lewis said.

Bones fuse during adolescence, but for adults with acromegaly, the growth hormone is still there.

“Everything on us is continuing to grow. For instance, my hands have grown a full digit,” said Jill Sisco, president of the Acromegaly Community.

The community supports people with the disorder all over the world.

Sisco knows first-hand the physical and mental pain acromegaly can cause.

“She said, ‘Have you noticed a change in your appearance?’ And I literally just started to cry and I said, ‘You know, it just seems like I’m getting uglier and uglier every day,'” Sisco said.

The disorder can be deadly if left untreated. Lewis was misdiagnosed for 10 years and only 20,000 people live with it in the United States.

“Our numbers may not be mighty but we do still matter. We need to get our voice out there. We need to advocate for those people,” Sisco said.

Sisco helped declare Nov. 1 as Acromegaly Awareness Day.

For Lewis, she’s using it as her motivation to keep fighting every day.

“It takes a long time for somebody to be able to stand up and say, ‘I have acromegaly, but acromegaly doesn’t have me,'” Lewis said.

And she’ll make sure it never will.

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