Advocating for patients with rare disease
Avon resident turned painful diagnoses into a journey helping others
By Stephanie Dolan
Brittany Anderson suffers from painful diseases that affect her daily life, and she’s using voice to fight for others in similar situations.
The 35-year-old Avon resident deals with pain from several illnesses including fibrous dysplasia, an illness that turns bone into fibrous tissue that doctors often refer to as “ground glass.”
“The main disease I suffer from is fibrous dysplasia,” she said. “This means my bones become incredibly thin along with many other problems.”
Her other diagnoses include fibromyalgia, trigeminal neuralgia, adrenal insufficiency and growth hormone deficiency.
For the second year in a row Anderson will travel to Capitol Hill Feb. 25-28 for Rare Disease Week.
She will be among 800 patients from all over the country and caregivers who will act as rare disease advocates. They will meet with members of Congress, learn about policy updates and brush up on best practices for successful advocacy.
One of Anderson’s goals is to get lawmakers to sponsor the Ensuring Lasting Smiles Act that will give people with genetic mutations the ability to have dental care.
“Right now, stuff like that and many other surgeries are considered cosmetic,” she said. “I lost all my teeth three years ago due to my disease shifting them. I’m hoping for the act to get passed so that I can have teeth again.”
Anderson met with U.S. Rep. Greg Pence (R-Indiana) and U.S. Senator Mike Braun (R-Indiana) who agreed to sponsor the bill.
Anderson’s diseases mainly affect her facial bones. Fibrous dysplasia is associated with a hormonal issue called McCune-Albright syndrome, and Anderson has had her pituitary gland removed.
“I depend on steroids and other medications to live, so it gave me a few conditioners like diabetes insipidus, which is a form of water diabetes that has to do with salt instead of sugar,” she said. “My thirst and urine output is what tells me I need extra medicine or that I need to see my doctor. The color of my urine tells me things, too. That condition has caused me to suffer a lot of brain damage.”
Her diagnosis goes back 16 years when she underwent what should have been a routine surgery in 2004. The doctor who was filling in for her regular physician ignored protocol, sending Anderson’s sodium levels soaring to a life-threatening level.
“The fix for that should have been a three to four day process,” she said. “But that doctor did it in five hours. After that I couldn’t walk or talk on my own for about two years.”
She can now move and speak on her own, but she is still afflicted with a movement disorder called chorea that gives her tremors.
“I still feel like a child inside,” she said. “That’s something that’s never gotten better and still affects me greatly. It’s really affected my level of confidence.”
Anderson is now cortisol dependent and will rely on steroids for the rest of her life.
“In an emergency, or when I have a fever, I may need a shot,” she said. “It can be very dangerous.”
While some of her problems were a result of the surgery, Anderson was born with fibrous dysplasia, but wasn’t diagnosed until she was a teenager when she had a tooth pulled at 13 and the swelling didn’t subside.
“Getting the tooth pulled kind of activated it,” she said. “That’s when the pain started. Shortly after that, by the time I was 15, I had a brain tumor removed. That surgery really activated it. Within three months my face was really big, so they had to go in immediately and perform surgery.”
When she was a teenager, doctors didn’t know what to say to patients with her condition about their futures, Anderson said, and that affected her outlook on life.
“There was no one to relate to,” she said. “It got a lot worse. I dealt with a lot of bullying. I was told I looked like a monster. If I went around people with kids, the kids would ask me what was wrong with me. People would stare at me, so I stopped going out. At one point, I didn’t even have mirrors around me. It took a great toll on me.”
Anderson’s mother, Vanita Bratcher, was a single mother who took care of her daughter on her own.
“She kept me with her at all times,” Anderson said. “She started making sure I got out of the house. She’s taken me camping and fishing to make sure I stayed engaged. My own dad couldn’t even look at me at that time. He said it made him sad. My mom never did that.”
Anderson still lives with her mother, her mom’s boyfriend and her two nieces.
“Being able to take care of Brittany has meant everything to me,” Bratcher said. “I’ve hated that she’s gone through this, but we’ve pulled together and done what we needed to do. It’s made me realize I have a little more strength than I always thought I had.”
Taking care of her daughter definitely brought them closer together, Bratcher said.
“We’ve always been together, and we always will,” she said. “I’d never let her leave my side. I need her, too. A lot of my strength comes from her. There are days when I’m just so tired, but she’s always there to help me refocus. She’s my light at the end of the tunnel.”
She’s proud of her daughter’s willingness to represent others like her in Washington, D.C., but she also worries.
“I worry because she’s alone, but I’m excited for her to go,” Bratcher said. “She wants to talk to the senators and make her voice known. She wants to bring awareness. That’s one of her main goals in life.”
Anderson’s sister Catreena also said she’s a local advocate.
“What she’s doing is so motivational,” Catreena Anderson said. “She’s learned so much, and she has some options that a lot of rare disease patients don’t have. I’m so proud of her.”
Her sister’s illnesses taught Catreena how unfortunate things can be for innocent people.
“It’s shown me how to be grateful and do as much with my life as I can,” she said.
Brittany Anderson copes with her down moments leaning into a Facebook support group, coloring and keeping a journal. Helping care for her niece helped her shift from staying in bed to advocating for others.
“Once I saw that she needed me, it’s like my whole mental state flipped,” Anderson said. “That’s also when I started advocating, using my journey in more of a positive way so she sees that. She knows what I go through, so I don’t want her to think it should stop you from trying to fulfill anything in life.”
PERSONALITY
Getting to know Brittany Anderson
What is your favorite food? Cheeseburgers
What are you currently reading? “Always Looking Up” by Michael J. Fox
Who or what inspires you? My nieces
What is your favorite TV show? “Alaskan Bush People”
What is your favorite movie? “Pretty Woman”
What do you do to relax? I like to put on my headphones and sit in my recliner, especially when I’m in a lot of pain.
