Two local women pushing awareness of rare disease they suffer from
Sarah Arceneaux, of Walker, and Tara MacInnes, of Baton Rouge, have something in common.
Both discovered as young women that they have a rare and life-threatening disease that affects the blood flow to the brain.
And both have undergone surgeries to correct the condition: MacInnes in 2004 and Arceneaux just two months ago.
The women and others with the disease — called Moyamoya — hope to increase awareness of the condition that often goes undiagnosed or misdiagnosed.
Monday, in fact, is being recognized as Worldwide Moyamoya Day by more than 1,500 people with the disease, communicating by Facebook from more than 20 countries.
Though the day is unofficial, its founder, MacInnes, hopes to change that one day and is in contact with the World Health Organization to begin the process of making it official.
But she said she didn’t want to wait for formal recognition to get things rolling.
A graduate student pursuing a master’s degree in counseling at Southeastern Louisiana University in Hammond, MacInnes, a native of California, has dedicated herself to educating others about the disease.
By the time she was diagnosed with Moyamoya and had the surgery in her teens, MacInnes learned she had had multiple strokes in childhood, all unrecognized at the time.
She’s learned, through tests as an adult, that those strokes affected the part of her brain involved in reading comprehension.
She can’t retain information that she reads silently, she said, but can comprehend things perfectly well if she reads them aloud or if someone else does.
“The whole ultimate goal is awareness of this disease,” MacInnes, 26, said. “It’s hugely misdiagnosed.
“I have a really lengthy list of all the things I want to do to raise awareness,” said MacInnes, who formed a Moyamoya support group that meets several times a year, and is beginning to be invited to speak before nursing students and medical professionals about the condition.
The Advocate wrote about MacInnes’ story in November.
For information about the support group, go to Facebook, using Tara MacInnes’ name or email MacInnes — who has swum competitively — at firstname.lastname@example.org.
“Moyamoya is one of the rarest occlusive (obstructive) cerebrovascular disorders encountered in neurosurgery,” says the website of Stanford Hospital in Stanford, Calif., which has a Moyamoya center where surgeries for the condition are performed.
It’s the place where both MacInnes and Arceneaux had their surgeries.
For more information on the hospital’s Moyamoya center, visit http://www.stanfordhospital.org.
Another U.S. hospital that has become known for its treatment of Moyamoya is Boston Children’s Hospital, which has a pediatric Moyamoya program.
Moyamoya causes the carotid arteries in the neck to progressively narrow until there’s little or no blood flow to the brain, MacInnes said.
The condition can be fatal without treatment, according to the National Institute of Neurological Disorders and Stroke.
As reported in a previous Advocate article, the incidence of Moyamoya in the U.S. is between one in 1 million and one in 2 million, but could be as frequent as one in 250,000 “because it is so underdiagnosed.”
The disease was first described in Japan in the 1960s, where it was named Moyamoya, meaning “puff of smoke.”
The tiny vessels that form to compensate for the blockage of the major arteries look like vaporous smoke on brain scans.
Sarah Arceneaux, 29, is one of five daughters, and is the mother of a little girl.
Arceneaux had never let the migraine headaches she’d had since childhood stop her from living a normal life.
But it wasn’t until the birth of her little girl that Arceneaux learned just what a medical challenge she’d been up against.
Those headaches she’d lived with hadn’t been migraines, after all, but the symptoms of Moyamoya.
She had grown up having a dibilitating migraine headache every few months, but when her mother, Denye Harris, took her to a neurologist when Arceneaux was 12 , the doctor “didn’t do any testing. She said it was probably hormonal,” Harris said.
Arceneaux grew up, started work and got married. She and her husband, Brian, have a daughter, Sophie, now 3 1/2 years old.
But two days after her daughter was born, in August 2009, Arceneaux, still in the hospital, had seizures and then a stroke that affected the right side of her body.
After seeing MRIs, a neurologist recognized that Arceneaux had Moyamoya disease.
Arceneaux went through a couple of weeks of physical therapy for her right leg, and close to two years of physical therapy for her right arm. Arceneaux, who said she’s thankful she’s left-handed, went back to work as an insurance claims coordinator four months after the stroke.
She was put on blood pressure medicine and picked up her life again, now knowing she was living with a disease that had been plaguing her all of her life.
Arceneaux said that about a year ago she decided she wanted to know more about the disease.
In June 2012, she and her husband attended a conference in Kansas for people with Moyamoya.
“I was the only person that had not had the surgery,” Arceneaux said, referring to a surgery that provides alternate blood flow to the brain through the use of healthy blood vessels from the scalp.
She began to gather information: One of her sources was MacInnes’ mother, Jill MacInnes, who was at the conference.
“I was really praying about it, thinking about it ... around the Thanksgiving holidays, I decided to fully go through with it,” Arceneaux said.
Her surgeon was Dr. Gary Steinberg of Stanford Hospital, who also performed the surgery for MacInnes.
Arceneaux, accompanied by her husband, daughter and parents, flew out to California in March of this year.
“I remember when I had my initial meeting with Dr. Steinberg, he said that without surgery I had a 60 percent chance of having another stroke,” Arceneaux said.
After a battery of tests, she had two daylong surgeries, one on March 20 and the other March 27.
“The surgeon said she practically had no blood flow to her brain. She’s a miracle,” Arceneaux’s mother said.
The family returned to Louisiana on April 5.
Arceneaux, who in mid-April was still recovering her strength from the surgeries, said that she can already tell the difference.
“Growing up I would get really, really tired easily. I have noticed I’m not as tired as I used to be,” she said.
In the future, MacInnes hopes to begin a nonprofit organization to raise awareness and funds for research for Moyamoya, she said.
In the meantime, she’s created T-shirts for the World Moyamoya Days to come.
The shirts are black, with red lettering. On the front, it reads “World Moyamoya Day.”
On the back, it reads “Got Blood Flow?” And patient shirts have an additional line that reads, “Ask Me About Mine.”