Rare skin disease conference comes to Indianapolis

INDIANAPOLIS (WISH) – Ichthyosis is a rare skin disease that affects about 16,000 babies each year.

On Saturday and Sunday, the Foundation for Ichthyosis and Related Skin Types, or FIRST will hold their National Conference for Families in Indianapolis. Among those expected to attend the conference, 2-year-old LuLu Swisher of Noblesville, and her family.

In a lot of ways, Lulu Swisher is your typical 2 year old, and youngest child.

“I would say out of all four of our kids she’s the happiest, and probably the toughest of them all,” said Chris Swisher, Lulu’s dad.

She commands attention, usually enlists her three older brothers as playmates, and boy is she fast.

But Lulu is special in that she was born with Ichthyosis.

“Immediately we knew something was wrong,” said Chris.

Ichthyosis is characterized by thickening or scaliness of the skin, which prevents her from being able to sweat. On a day where the temperatures are higher than 80, Lulu stays indoors.

“She could have a heat stroke or have heat exhaustion,we worry about her overheating which is very common with Ichthyosis patients,” says her mom, Kelsey.

She has a rigorous routine to prevent infections, or her skin from becoming too dry.

“Two to three times a day, soaking her in a tub or in a shower just to get her skin moist. And then we apply a lot of lotions and creams, Aquaphor just to try to keep her skin moist, but it’s a real challenge,” said Kelsey.

LuLu has a team of doctors, a pediatrician, a pediatric dermatologist, a geneticist, an ENT, and while she’ll always have the disease, there is hope that the research being done could lead to some sort of gene therapy.

“She’s a happy go lucky little 2 year old,” said Kelsey. “She just cruises all around, she itches all the time, and she’s just used to it, and she lives with it.”

“I would say out of all four of our kids she’s the happiest, and probably the toughest of them all,” said Chris.

The FIRST conference is at the Hilton hotel in downtown Indianapolis Friday through Sunday, for more information click here.

 

 

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