The chances of having cystic fibrosis are rare. There are only about 70,000 individuals in the world with the disease. But what are the chances of having the disease at the same time as your …
The chances of having cystic fibrosis are rare. There are only about 70,000 individuals in the world with the disease. But what are the chances of having the disease at the same time as your grandchild?
Doris “D.J.” Bloxson, a 54-year-old grandmother, lived most of her life without knowing she had cystic fibrosis. It wasn’t until granddaughter, Ellie Bean, was diagnosed with the disease in the womb, and her daughter Sherry and son-in-law Simon Bean were discovered to be carriers, that D.J. decided to get tested herself.
Ellie is a 9-year-old fourth-grader at Black Fox Elementary, and claims to be the catalyst that inspired D.J. to get tested. She said this because starting at age 3, Ellie continually called her grandmother her “twin,” in an almost precognitive understanding of her grandmother’s condition.
“Ellie kept calling me her ‘CF twin.’ Her doctor at the children’s hospital encouraged me to get tested. You do that through your primary care doctor. Unfortunately, a lot of doctors don’t exactly believe a 54-year-old grandmother has had CF her whole life and not known it,” D.J. said with a laugh.
She went several years believing herself to be negative for CF, despite the mounting evidence to the contrary. Some of D.J.’s symptoms included developing pancreatitis in her 30s, sweating salt crystals and struggling with digestive issues. It wasn’t until Ellie’s doctor suggested performing a sodium chloride sweat test on D.J. that a primary care doctor discovered her condition.
Based on the pair’s genetic similarities due to their blood relation, their mutations can be treated with similar gene altering medications, and they don’t have to be kept six feet apart.
“Thanks to organizations like the CF Foundation and Great Strides, money is available for research into something so rare,” D.J. said.
Upon learning t her mother had CF, Sherry said she’s gone through moments of denial and acceptance, and described the experience as “mindboggling.”
Describing herself as a fighter and survivor, D.J. once had a list of numerous foods she couldn’t eat that would cause her digestive issues. Family dinners and eating out were incredibly limited due to these restrictions; however, she said that since she’s been taking her gene-altering medications, the list has now dwindled down to only two items.
Ellie explained living life with CF isn’t that much different than everyone else’s lives, except you take enzyme pills before each meal and wear a vibrating vest for 20 minutes each day.
Those with CF cannot be within six feet of one another. Because of this, Sherry is very adamant about keeping in contact with everyone in town to ensure no one with CF accidentally runs into another with the disease.
“We have to keep in touch with other parents, as we’re often in similar situations as other kids with CF, so we have to ensure none of them stand or sit beside one another. They’re toxic to one another,” Sherry said.
Since Sherry was in medical school until recently, the family hasn’t been able to attend the Great Strides 65 Roses 5K for the last few years; but she hopes to attend this year. Ellie even has her own CF team called “Ellie’s Flight Crew.”
Although research has come a long way, there are still numerous people dying from the disease, as each mutation is unique to each person. Some people who have the same exact CF mutations could be faring completely differently, with one being healthy and another one ill, depending upon their environment and exposure to germs.
Vanessa Hammond, English lecturer at Lee University, has a son, Will, who has CF, and stressed the effectiveness of various CF medications such as Kalydeco, which is what Will takes.
“I’m not sure exactly what medicine Ellie takes, but I’m amazed at just how much these drugs help those with CF like my son,” Hammond said.
Hammond is extremely involved with the Great Strides program, where she works with community sponsorships, while also taking part in CF events around the community.
Sherry believes a large obstacle facing those with CF is that a big portion of medical professionals don’t have extensive knowledge on the subject, meaning awareness of CF is vastly important.
“When I was a child, kids would have had CF camps. But then they realized they were toxic around each other and kids were coming home sick, so they no longer do things together. It’s quite a lonely illness, since you can’t actively sit and talk with someone with the disease, other than through the Internet of course,” D.J. said.
Hammond added talking to others about CF helps those dealing with the disease, and feels encouraged when she sees how effective medicines are becoming, especially for younger people like Ellie.
D.J. and Ellie encourage everyone to go check out the CF Foundation’s website and also Great Strides. There are numerous organizations raising money for research to help people just like these two every day.
For more information, check out www.cf.org or www.cff.org/greatstrides.
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