Two sisters diagnosed with the same one-in-a-million disease weeks apart are recovering side by side after undergoing matching brain surgeries.
Tasha, 25, and Katrina Baldwin, 27, have moyamoya, a mystery disorder caused by blocked arteries at the base of the brain.
Teaching assistant Tasha first experienced symptoms earlier this year when her arm went numb.
Doctors later found she had suffered multiple strokes caused by moyamoya.
The same day Tasha was diagnosed, January 26, her older sister Katrina lost the feeling in her arm and her face began to droop.
Doctors diagnosed Katrina, a packing line worker, with moyamoya on February 25, but have failed, in both cases, to pinpoint a cause.
Moyamoya affects just one in every 1.1 million people in the U.S., and mostly occurs in women – particularly those of east Asian descent – suggesting that it can be genetic.
Incredibly, Katrina’s doctor believes that as the sisters are not of Asian descent and have no history of the condition in the family, their cases are a rare coincidence.
Without treatment, the disease causes major strokes and mental decline. It can be deadly or leave sufferers severely disabled.
Earlier this year, the sisters supported each other through identical surgeries to bypass the blocked arteries and improve blood flow to their brains, reducing their risk of stroke.
The women, of Baudette, Minnesota, are now on the road to recovery and doctors hope they will be able to lead normal lives.
“I had never heard of the disease until the doctor brought it up to me,” Tasha said. “The doctors looked into our family history, and there isn’t anything that would have caused us both to get it.”
“My one and only symptom was that my arm went numb. It started tingling and it felt like dead weight when I would try to do simple tasks,” she said. “I was extremely shocked to be experiencing something so rare.”
“My life was pretty normal before I started randomly having symptoms,” Katrian, who is engaged to fiance Chad Weise, 27, and has a 2-year-old daughter, said. “My arm went numb, and my face went numb and started drooping. I tried to smile and I couldn’t.”
“It affected my right side, and then my speech went. I was mumbling and slurring, and I sounded drunk,” she said. “It’s pretty crazy that my sister went through the exact same thing, but we were both happy to have someone to go through it with.”
Moyamoya is a rare and very serious progressive disorder caused by blocked arteries in an area of the brain called the basal ganglia.
Tiny blood vessels open up in the brain in an attempt to supply it with blood, and this cluster is nicknamed “moyamoya”, meaning “puff of smoke” in Japanese.
Because the illness is so rare its exact cause is unknown, but experts believe factors ranging from genetic defects to traumatic injury could trigger it.
In at least half of all known cases of moyamoya, the disease has no identifiable cause, according to Boston Children’s Hospital.
Dr. Michael Manchak, a vascular neurologist who treated Katrina at Sanford Health in Minnesota, described the likelihood of two sisters having it as “extremely low”.
“It’s a very unusual disease to see here in North America,” Manchak said.“The likelihood of this happening to two sisters at once is well under one per cent – it’s extremely low. It’s unusual in the first place for two sisters to have it, but what’s more unusual is the timing of it all. I think it’s essentially just a coincidence.”
Tasha and Katrina are both currently recovering after having neurological surgeries at Sanford Neuroscience clinic in Fargo, North Dakota.
Katrina had her first surgery, to bypass the clotted artery in the brain and increase blood flow, one day after receiving her diagnosis. She had a second on May 29.
A few days later on March 8, Tasha had her first surgery. She had another surgery, to treat the left side of her brain, on May 15.
“If I didn’t have the surgeries when I did, I would have had a major stroke and I wouldn’t be here today,” Tasha said. “It was awful knowing that Katrina was sick too, but at least we could ask each other if we were having the same problems. I’m the older sister, so I was scared for her.”
“I definitely don’t take things for granted anymore, and I’m so happy that I get to see my daughter every day,” Katrina said. “I feel very lucky to have come out the other side.”