NEW FRANKLIN Paige Mobley has had her fair shares of ups and downs over the past 10 years.
When Mobley was 10-years-old, she was diagnosed with a rare esophageal disorder known as Achalasia. The disease causes the upper and lower esophageal sphincter muscles to no longer function correctly. There also is a loss of all peristalsis or motility after swallowing.
Mobley, a 2016 graduate of Manchester High School, first came down with an illness when she was 10. At first, it was thought to just be an eating disorder.
“The symptoms were very reflective of that of an eating disorder so needless to say I was misdiagnosed many times over before they finally gave me the Achalasia diagnosis,” Mobley said.
She had an upper GI done, which confirmed she had Achalasia. Going through school with this disorder was a challenge for her because it is so rare she couldn’t relate to anyone else going through it.
Mobley said she would often eat a certain food early in the week only to throw that same food up later in the week. She has been to three different hospitals in Ohio having several different surgeries. Her first surgery only lasted a year when she was told it would last 10 years.
When she was 14, she spent 21 days in the intensive care unit and had four surgeries in three weeks. Her family didn't know if she would survive and after being bedridden for so long she had to teach herself how to walk and function again.
She said Achalasia is like an invisible disease and those suffering from it are often overlooked.
Some of the procedures she has had during the last 10 years include upper endoscopies, dilations, two Heller Myotomies, two fundoplications and has been placed on many different medications.
One of the most frustrating aspects is knowing the surgeries are only temporary relief Mobley said.
Most recently in May, Mobley took a major last resort step having an esophagectomy performed. During this procedure, the esophagus is removed and then the stomach is pulled up to reconstruct the digestive system. This is a common surgery utilized for those with esophageal cancers.
Before this surgery, she said her esophagus was three to five times the size as normal. Also, her esophagus was dead and no longer had functional use.
Soft diets and liquid diets were very common for her but now she is starting to eat meat again and is expected to be able to have a full diet by Thanksgiving.
“The last 11 years eating and the social part of my life has been a struggle,” Mobley said.
Doctors believe how she got Achalasia may have something to do with when she had scarlet fever when she was two-years-old. There is no permanent cure to the disease, but she is thankful to be doing better.
Mobley’s mother, Allyson, said it has been a challenge to get through all of this.
“To see your kid go through this and struggle is so hard,” Allyson Mobley said.
Facebook has been a great tool, Mobley said. She started a support group on Facebook in 2018 where she has been sharing her journey and also helping those dealing with the same disease.
She and her mother said they cannot thank the community enough for all the support.
“The saying it takes a village to raise a child is so true,” Allyson Mobley said. “And that village has been very good.”
Through her Facebook group, she has met several people in her community who have the same disorder as her or a very similar disorder. Mobley said a woman from Cuyahoga Falls found her page who has the same disorder and Mobley was able to direct her toward the doctor she sees to help her.
“I want people to learn about the disease since it is so rare and understand the extent of what those who fight it have to go through,” Mobley said.
Her group on Facebook is called Paige's Patriots and has 649 members, some of whom are in Germany and South Korea.
Mobley has been attending Ohio State University, which some of her classes she had to do from home at her computer because of her illness. She plans to return to campus this fall and will graduate with a degree in Speech-Language Pathology following the fall semester.
In the future, she hopes to continue to spread awareness as she would like to speak publicly about her disease and help others in need. She is also considering in the future starting a scholarship for seniors at Manchester or a non-profit type organization.