DES MOINES, Iowa — Saturday, May 30th is proclaimed by Gov. Kim Reynolds as Huntington’s Disease Awareness Day in Iowa. It’s a rare fatal genetic disorder. Right now, there are approximately 41,000 symptomatic Americans and 200,000 at-risk of inheriting the disease. The Jensen sisters from Menlo are a part of those few.
Huntington’s Disease (HD) has always been a part of the Jensen’s family, watching uncles, aunts, and cousins get diagnosed and succumbing to a sickness described as a combination of Amyotrophic Lateral Sclerosis (ALS), Parkinson’s Disease, and Alzheimer’s Disease. But when their father tested positive for the gene, that’s when it really started to hit home.
“His wrist would stick like this. He would call it his pet goose,” Holly Jensen, the third Jensen sister said.
Holly’s father was diagnosed with HD when she was just seven-years-old. Holly and her three other sisters witnessed first hand the symptoms take over their father’s life.
“People are invincible when you are that little and I think it was just a shock learning that your superman is going to slowly suffer and die,” Holly said.
With their father’s diagnosis, all four girls knew they had a 50-50 chance of also having the faulty gene, but symptoms usually don’t develop until later in life.
“That’s always been in the back of your mind, but as you get closer and closer to 18, which is the testing age, things start to develop. You think about how your life is going to go. You think about if you want to know or if you want to get tested,” Holly said.
The oldest, Whitney, then pregnant with her first child, was tested.
“She tested positive and it was one of the worst days of my life, just knowing that she could have it and there’s nothing you can do about it,” Holly said.
The second oldest, Kayla, didn’t have to wait until she was 18-years-old to be tested. She was already starting to show symptoms, and was diagnosed with juvenile HD. It happens in less than 10 percent of cases.
“It’s just earth shattering every time someone you love is diagnosed with it, especially at the age she was,” Holly said.
Holly decided to get tested next. She said she needed that piece of mind. Though the odds in her favor, she too tested positive.
“I mean it sucks. We’ve kind of learned to prepare ourselves for the worst but hope for the best. It doesn’t suck near as bad learning about yourself as it does learning about your family members,” Holly said.
While grappling with the diagnoses and caring for both their father and Kayla, the family took another crushing hit. Their mother was diagnosed with colon cancer.
“It was awful. She was my support person. She was always there for us,” Cheyenne Jensen, the youngest sister said.
Their mom lost her battle in 2012. HD took Kayla’s life in 2014. Their father died in 2015.
“Within three years, three people were gone. I mean, that’s half of us. It’s very hard,” Holly said.
Cheyenne was last to get tested and the sole sister to not have HD.
“Being negative you definitely have survivor’s guilt. It’s not fun just knowing. For me, and I always say I’m so selfish for thinking this, but I hate knowing I could be the only one left some day,” Cheyenne said. ‘Of course, I have my nieces and my nephews, and I have a son, but just knowing my immediate family could all be gone and I’m the only one left just freaks me out.”
But Cheyenne faced her own health affliction. She was diagnosed with Acute Myeloid Leukemia (AML) in 2018.
“I always say that’s my punishment for not having Huntington’s,” Cheyenne said while laughing. “We just try to make light of every situation we get.”
Those situations, undeniably tough, but the Jensen girls say they are living their lives to the fullest.
“Regardless of what my sisters and I have been through we fight. There may be only three of us left, but there’s nothing we can’t get through,” Holly said.
“We just always stick together, wake up every morning with a smile on our face and we will get through anything God gives us,” Cheyenne said.
Only about 5-10 percent of those at risk of getting HD decide to get tested, according to the Huntington Disease Society of America (HDSA). Whitney’s daughter, Dallas, who she was pregnant with before knowing she was positive now too has a 50 percent chance of having the disease. Holly said she’s decided to not have kids.
Both Whitney and Holly do not currently have any symptoms.
There’s a virtual Team Hope Walk Saturday in Iowa for HD Awareness Day. You can find out more information about the walk on the HDSA Iowa Chapter’s website.
The Jensen sisters are also working on their own fundraiser coming up this August called “Cruisin for a Cure.” You can find more information about the event below or on their Facebook page.