Brittle diabetes patient deals with daily challenges

At age 35, Laurie Arnold’s body is breaking down. The gastrointestinal challenges she has had most of her life are getting worse. She is going blind in both eyes, and neuropathy is settling in to her fingers and toes.

But Arnold is a miracle, said her mother, Yvonne Rupert. She was diagnosed at 9 with brittle diabetes and Rupert was told her daughter wouldn’t live past 32. She is defying her odds and only recently started showing real signs of losing ground with her fight.

According to Johns Hopkins Medicine, “Brittle diabetes is sometimes used to describe the condition of patients who have frequent swings in blood glucose levels from very high to very low.” While blood glucose naturally rises and falls throughout the day in response to meals, activity or other influences, spikes with Brittle diabetes — sometimes called labile diabetes — can hit dangerous levels, requiring medical attention.

Type 1 diabetes is insulin dependent. That means Arnold’s pancreas doesn’t produce the insulin her body needs to regulate the glucose in her blood. With brittle diabetes, Arnold is challenged even more because traditional methods that typically make Type 1 diabetes manageable often do not work.

The result is dramatic and nearly constant spikes and drops in glucose levels throughout the day, making it nearly impossible to regulate. And that disruption dramatically harms vital organs.

Still, Arnold considers herself blessed. Diabetes is often a deterrent to pregnancy because the strain on the mother’s body could cause death. Arnold lost her first pregnancy to miscarriage. Her second resulted in a stillbirth.

But nearly four years ago she and her boyfriend, Joe Rera, had a son.

Jayden, who his parents affectionately call “Bug,” is the light in Arnold’s journey. Although she is losing her sight due to significant hemorrhaging, Arnold’s blue eyes sparkle when she speaks of her son. Like any mother facing a potentially terminal illness, Arnold is worried she will not be around to watch Bug grow up.

Arnold has been independent her entire life, Rupert said, and too proud to ask for help. A server at an Olive Garden restaurant in Port Richey for more than 10 years, Arnold only recently began reducing her hours because of her health.

“They’ve been wonderful,” she said of her employer. But the family is struggling financially to survive.

Because of her failing eyesight, Arnold no longer drives. She receives laser injections on a regular basis, which aren’t covered by Medicaid. And she relies on her son’s father to provide the majority of the couple’s income.

Now Arnold admits she needs help, although it is difficult for her to ask. But Rupert says she will do anything to save her child. A server for The Jersey Cafe, Rupert is so popular that her customers have taken up a collection to help offset Arnold’s medical challenges.

She needed a special insulin pump, and Rupert started the collection in hopes of helping offset the cost. “One of my customers came in with the pump,” Rupert said, her voice cracking slightly.

But the fight is ongoing. Perhaps because brittle diabetes is less common and not widely understood, patients receive little relief and face lots of frustration. When Arnold needs serious medical attention due to glucose spikes or drops, hospitals immediately want to admit her for an extended stay.

“They spend days trying to regulate her sugar,” Rupert said, which has, at times, dropped dangerously low.

Arnold said she immediately tells medical personnel about her condition. “It doesn’t matter,” she said. “They still try and treat it like traditional diabetes.”

Rupert speaks of the hurdles her daughter faced growing up with diabetes. And Arnold listens intently but offers no detail. She doesn’t remember. Her mother added that amnesia is part of the disease.

Still there is sadness behind Arnold’s eyes. She has surrendered to her plight, recognizing she does need help. And her mother will stop at nothing to make her daughter’s life easier.

It begins, she said, by bringing awareness to the difficulties of brittle diabetes. “If our story can help someone, then we have to tell it,” she said.

The family is planning fundraising events to assist Arnold and to bring awareness to this more-complicated form of an already deadly disease.

For more information on how you can help this family, contact Joe and Valerie Cuce, owners of Jersey Cafe, at (352) 596-1424.