South Dakota family faces rare brain disease

December 29, 2018
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Bryan David Nelson, left, Kayla and Kandie sit together at their home in Sioux Falls, S.D., on Wednesday, Dec. 12, 2018. Kayla and Kandie both have a rare medical condition called Cerebral Cavernous Malformation (CCM), which involves tangled blood vessels in the brain or spinal cord that can bleed and cause hemorrhages, seizures, or stroke-like symptoms. (Loren Townsley/The Argus Leader via AP)

SIOUX FALLS, S.D. (AP) — Kandie Nelson feels like a ticking time bomb.

If a headache lasts too long, she worries it will mean another hospital trip.

The 45-year-old has seven tangles of blood vessels known as cerebral cavernous malformations in her brain. The mulberry-shaped tangles can bleed and lead to seizures or stroke-like symptoms.

It’s an incurable disease she’s lived with for more than a decade. She’s gotten used to the stress and irregularity of her condition.

But her children have CCM too. That’s the tough part.

“The most difficult thing was finding out that my kids had the gene — that devastated me,” Nelson, a clerk for the city of Sioux Falls, told the Argus Leader . “I was so afraid because I didn’t want them to go through what I went through. As a parent, you want to protect your kids, and I couldn’t protect them from this.”

But instead of letting the disease control their lives, the Nelsons have banded together as a family, drawing strength from one another.

About 12 years ago, Nelson was working at the front desk of a hotel when she couldn’t speak on the phone. Her hands, legs and feet grew numb and she fell. She didn’t know it at the time, but a CCM in her brain was hemorrhaging.

Soon after being diagnosed with the condition after the incident, Kandie Nelson and her husband, Bryan Theodore Nelson, 48, genetically tested their children. Two out of the three — Kayla Nelson, 20, and Bryan David Nelson, 26 — have CCM.

Kandie Nelson, Kayla Nelson and Bryan David Nelson have a mutated gene in CCM2, which distinguishes their strand of disease from two others: CCM1 and CCM3. They’ve all gone through brain surgeries at Mayo Clinic, which have relieved Kandie Nelson and Kayla Nelson from deficiencies. Bryan David Nelson still has issues with balance from a CCM that bled in his spinal cord.

Neurologist Kelly Flemming has worked with the family since 2016. While the disease is “anxiety provoking” for many patients, Flemming doesn’t see that with the Nelsons. Instead, the family “takes the good with the bad.”

“They’re fantastic people with an amazing amount of resilience,” Flemming said. “Kandie’s experience helps the kids be less anxious because she’s able to know what to expect.”

Kayla Nelson said she has a personal support group in her family, and advice from her mom has helped calm any fears she’s had during treatment or surgery.

“I think at the time I was still anxious because it was my first major surgery,” Kayla Nelson said. “There’s times when I still get bad headaches and bad anxiety, but my mom’s always there to help me through it. So is my dad.”

Support from friends, extended family and groups like the Angioma Alliance has made it easier for the Nelsons. But it’s supporting each other that’s been most important.

“Bryan was my biggest supporter,” Kandie Nelson said of her husband. “He sat there and stayed strong through my tears and me asking ‘why me?’”

One day when Kandie Nelson felt a seizure coming on when the kids were still young, she wanted to cry. But since she was around the children, she laughed instead. Finding humor in her situation was a way to help her children through it as well.

“It’s going into this with humor and seeing it in a different perspective — that, yes, it’s an incurable disease right now but it’s not that bad. Laughing makes it easier and better,” Kandie Nelson said. “I think we’ve gotten to the point where we joke about it. My kids will joke at me, ‘Hey, you have half a brain.’”

None of the Nelsons plan on letting their condition keep them from achieving their goals.

“Between Kayla and Bryan (David), I think I get strength from them knowing that they’re continuing on with their dreams and not letting a ‘weakness’ or a disease get them down,” said Bryan Theodore Nelson, an electronic technician for the Federal Aviation Administration in Sioux Falls.

After her surgery as a junior in high school, Kayla Nelson planned to be a neurosurgeon and work on patients with her same condition. But since she doesn’t have “steady enough hands,” the medical biology major at University Center in Sioux Falls wants to become a neurologist and study CCM at Mayo Clinic instead.

Living with CCM herself, she said she’d be able to better empathize and relate to patients who will also have the same condition.

Each of the CCMs taken from their surgeries have been donated for research to find a cure. Flemming also works with the family to find how lifestyle factors, medications and other medical problems influence bleeding from CCMs.

“It’s a rare disease, but I think there’s a lot of hope in the near future,” Flemming said.

Based on statistics, there should be about 350 people in Sioux Falls with the disease. The Nelsons only know five other people besides them in the city with CCM, and believe many in the area don’t know they have the condition.

With research for further treatment, Flemming said there will be multiple clinical trials in the next few years.

“I believe God puts you here for a reason,” Kandie Nelson said, “and I believe one of my things to do in life is to help find a cure for this. I don’t know how, but I believe it.”

These days, it’s more important than ever to Kandie Nelson that a cure is found.

Bryan David, who’s a mechanic, just had a child in October. It’ll be another eight months until they can test the baby for CCM.

No matter what happens, Kandie Nelson and Bryan Theodore Nelson plan to support their son and daughter-in-law in just the same way their family’s found support in each other.

“The biggest thing we’ve learned is for people to find their strength,” Bryan Theodore Nelson said. “Whether that be family, God or whatever their faith may be — find your strength and surround yourself with that.”


Information from: Argus Leader, http://www.argusleader.com

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