Gage Hollis, suffers from Langerhans Cell Histiocytosis
Josh Hearne, suffers from Chiari Malformation
LUFKIN, TX (KTRE) -
Thursday marks the sixth international Rare Disease Day. A special day that unites more than 60 countries worldwide as they spread public awareness about those suffering from tragic and rare diseases.
Two people from the Lufkin area have lives have drastically changed since coming face-to-face with the unknown future of living with a rare disease.
"It's very hard for us to watch him go through this because we don't know if it will come back," Krystal Hollis said. "Not sure if it will go away. And we don't know if the chemo will work because it's just kind of a trial run to see if chemo will kill it."
Krystal Hollis says her eight-year-old son, Gage, started to complain of knee pain last year.
"My husband and I noticed that his leg was kind of turned out," Hollis said. "He wasn't walking very well so I took him to his local pediatrician and they did an X-ray and that's where they found the one-inch tumor on the upper part of his leg."
Gage was diagnosed with Langerhans cell histiocytosis, a rare autoimmune disorder that causes abnormal cells to form together, making a tumor.
But Gage isn't the only East Texan suffering from a rare disease.
Twenty-six-year-old Josh Hearne had surgery three years ago for chiari malformation, a defect in his cerebellum that causes him to have extreme pain in the back of his neck.
"Imagine taking a bunch of red hot ice picks and just stabbing them right in the back of the head and keeping them right for about ten seconds and just ripping them out," Hearne said.
Hearne says his disease is so rare a lot of doctors mistake symptoms for a pinched nerve.
"In my case it causes cysts to form through my C2 and C6 and that was more of a concern with the surgery I had to have because it end up causing nerve damage," Hearne said.
Hollis and Hearne says Rare Disease Day is a great way to share awareness about being misdiagnosed because these diseases are so rare.
"I just want to get the word out that there are more kids with this than many other people know," Hollis said.
"If you aren't supposed to be hurting all day long, then something's not right," Hearne said.
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