Living with Huntington’s disease

ABC News’ Linsey Davis follows two families grappling with the rare genetic disorder Huntington’s disease, compared to ALS, Parkinson’s disease and Alzheimer's disease all in one.
15:37 | 07/04/20

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Transcript for Living with Huntington’s disease
As the entire country faces the impact of -- nineteen millions of Americans are still grappling with other major health issue that persist in the midst of the pandemic. Some of them suffering silent through disease that you may even heard of Huntington's disease it's a rare genetic disorder. With a devastating impact on thousands of Americans. And we following two families facing the same disease each with their own distinct struggles we should know that we filmed with them prior to the pandemic hit. Before masks or social distancing it ever been uttered. Here's their story. Series few decades. When Scott in Kelsey Porter pledged their commitment to each other seven years ago. They could have no way of knowing just how intensely those vows of in sickness and in health would ultimately be put to the test. You may recognize him as the handsome high school quarterback from Friday Night Lights. Paralyzed on the field in the show's first episode yeah. But I'm Obama play up. Fran sites receiving an Austin. And we had some friends in common. And we ended up at a Halloween party together if the plane basically. There off screen love story first blossomed in Texas and 2007. Over that first month of just getting to know each other. We just found out how family oriented we both are we and it can't please say it was the perfect day. Now in your thirties and living in LA their shared love of family has become more important they never. We got married in a profit of 2013 and my parents told that set us down and told us that my mom had been diagnosed with Huntington's at that Christmas thought we are. I didn't know what it was I didn't know anything about it and so anytime and I think. A parent or in the number tells you that they have a genetic disease it's. Incredibly tartan. Huntington's disease also known as HD is a rare and devastating genetic disorder. It impacts both motor skills and brain function as nerve cells in the brain deteriorate. The most common physical symptom is involuntary body movements called Correia. In its later stages HD symptoms are often described as hail as parkinson's and alzheimer's all rolled into one and there's no known cure. It is Kelsey and her mother would soon discover Huntington's. Is a family disease. At night that's all let's focus Thomas my mom tapping it and eventually it came Acton. Settled and I'll I I'm I happened he would. If a parent carries the mutated gene that causes HD. Your children have a 5050 chance of developing Huntington's as well Huntington's disease a genetic twist of fate. The disease determined before birth but usually not revealing itself until people are in their thirties or forties about 41000. Americans are currently living with HD another 200000 more are at risk of inheriting it. Unlike most young people with a family history of Huntington's Kelsey chose to get tested immediately. We sat down with. The doctor and the genetic counselor and they let me know that I had it. And I honestly barely remember that moment. In the face of that devastating and life changing diagnosis they became determined to raise awareness about the disease. Work that can help people far from the red carpets of Hollywood. Like Texas native Justin Furstenberg. Whose high school years played out like a real life Friday Night Lights. It. Once playing in front of packed crowds of the stadium in Mesquite, Texas. Not just a high school athlete Justin was a top student and later earned a college degree in accounting. I was always room. Room when and science you know and I can still vote go easy on me. I get frustrated it is. We'll. Struggling in recent years to even hold down a minimum wage job here. ABC news producer in its he has still a lot of grew up with Justin and noticed a post on FaceBook. We're an honors math classes history government all these top classes. Graduated in the top 10% of our class. Also know you've struggled a lot in the last couple years and when I saw what you posted about Huntington I was like. Something just click those like maybe that's what's going on just in saying that FaceBook. Posed that he want to get tested to discover if like his mother. Two had Huntington's disease at the university of Texas health McGovern medical school. Doctor airing first dimming specializes in evaluating and treating patients who may have Huntington's. Impulsivity. Is not uncommon in folks with HD and pour in decision making. And and these changes can occur years before folks manifest motor symptoms obvious man who motor manifestations. And so that you might hear from a spouse or significant other that their loved ones and has really their personality has changed and they just seemed different. And they're doing things that can he or she wouldn't have done before but they may not fit to into together or if they don't know about the family history. Determined to get answers Justin and his wife missy headed to doctor first inning center in Houston to get tested for the mutated gene that causes the disease. Allowing our cameras to follow. It's this part of an of us whose careers. Questioned it myself I get frustrated because I've talked things lot more control of important nations can horse. And also the ability to process things my hope is just trying confirmed weather Huntington's. Because you know my mother has. And it hasn't and obviously ever the mother had it. And I know that. And others have been 2% chance that I could have it so I'm this morning get a confirmed. Doctor first inning works closely with a psychologist genetic counselor and a social worker for anyone going through the testing process and I think that. Did they find her okay aren't the test itself is straightforward. Short neurological exam followed by blood draw out to be sent out for genetic testing. Results are available in a matter of weeks. The decision to get tested is a deeply personal want. HD patients live on average ten to twenty years with symptoms which worsen over time and eventually become crippling with. No known cure. A Reese study shows that as many as 90% of those with a parent with Huntington's Jews not to get tested. Many saying they prefer not to know their fate until potential symptoms appear. The cost of medical care for HD patients is also daunting. With a potential Huntington's diagnosis posing extreme challenges for long term care or securing life for disability insurance. There are a lot about her bank those heads that policy. Proud county's intention. Parents I think if your test results come back positive. And then you try to get what those heads of pollen you. He and he pretty hosts have high. Here you get a call. With limited resource is Justin in roles in an Obama care plan but says he can't afford additional insurance coverage. For Justin and potentially life altering diagnosis. Comes down to a few more weeks of waiting. Travis beware of the far from that is this very stressful period. To just be centrally themselves if he feels or he you know anxious. All of this as fast. So village this credits that where and. Weeks later we travel with Justin and his wife as they can make the journey from Dallas to Houston here to receive his results. They don't want to make you wait any longer. A graduate gave me opportunities asking me last minute questions please any concerns before we go for your thoughts. Dairy. You can see. And conditioning test results in a hurry and he's he showed that he isn't that I think we've seen him. Yeah we're hoping more. Well soon we knew we finish. This result stoned you are. This is more information. Out of you pay this helps explain why you've experienced of the changes that you have your same person. As you were. There where he got here okay. And now I have this information and now we focus on OK what do we need to do what's the next step. For doctor first inning delivering these results never gets easier. It's its staff plan emotional experience even if you think you're reading. Can't ever be ready we can't it's it's tougher for us even giving a results I can't even imagine receiving results. Early stage treatment can include physical therapy for motor issues in medications for cognitive symptoms. And new research offers promising science there's absolutely reason for how well we don't yet have an approved disease modifying therapy for H state. We absolutely have a fact of symptomatic therapy patients diagnosed with Huntington's can also apply for Social Security benefits when they're no longer able to work. Last I told Justin and HD is progress says but it's relatively slowly progress and so nothing will change for Justin tomorrow or next week hurt aren't I following week. So it's really about focusing on on what we can do. And for just in the diagnosis does give some sense of relief and an explanation for the struggles he's been handing. It's going to be. Along during. You know I know. What wrote that it and irritate her. But life continues to be challenging unable to hold onto a job or health insurance just in can't afford any therapy or medications for HD. And he was recently denied Social Security benefits a decision he's now appealing. Justin's financial and health coverage situation are both dire. But Huntington's presents challenges for anyone diagnosed looking for long term insurance and care including reporters back in LA. The weighted insurance works in our country is such that well that work TU. So sorry we can't help you handle anger and if you don't hate your insurance is before. Whiff of Huntington's comes up in your family you will not have long term care insurance you mocked her life insurance it angers me. It's not just heartbreaking it is it is so frustrating and so. There needs any more awareness about this disease that it exists. That people are at risk and don't even now when it. The couple he's helping to find here for Chelsea's mother. Now experiencing symptoms of Huntington's herself. Cherishing the moment she has with her grandchildren. Would so much of the future unknown having children was the one thing supporters were determined to pursue upon learning of Kelsey is HD diagnosis. She immediately started just researching. How do we have kids safely. How we do this and Kelsey. Turner Meehan and and said. I'm going to be a moments as long as I can. So we need to have kids. As soon as we can't. Through IVF in genetic testing they hoped they could eliminate the HD gene for the future generations of their family that's it. PGD I ES stands for pre implantation genetic tightness and and basically what they do is they take my ankle. And site went through the whole arduous process that idea which is. That shocks that act removal all of fat fat Avant anybody with fertility issues that go through. And we. Had twelve embryos that were sent off and only five of them were negative for the Huntington's gene which means. Seven of them had Huntington's which is more than 50%. Supporters say they understand the ethical debate over using IVF to select healthy embryos. Yours S you know. I got like mine Huntington's. And you question yourself a lot of away and you have internal struggle the whole way. A man those kids. Because Steve kids man I'm just. There everything we know that night. There what we're supposed to have been and there healthy. They're gonna be healthy and Varian. Be here with her mom her for a long time and he did it that's what we did it. Oh yeah their fertility journey insure their children do not have HD. I. Came with a huge investment. It was six figures. However two kids healthy. And without. Huntington's. But so many people don't have an opportunity and the fact that there's no one else there to help them it is. Just harper can. Kelsey and now are now savoring every moment we win a half year old clover and five year old McCoy. As Kelsey works on keeping up her physical strength in the face of what will be the fight of her life. If nothing ever changes. And we don't. Find a way to stem the tide of Huntington's. There's a distinct possibility that. McCourt and clover won't know. Two different. Months over the course of their life. And she wants to be. Herself. And wants her children to really know her as her for as long as they possibly can. Supporters are encouraging others with HD to keep fighting along with them. As we work with the Huntington's disease society of America to raise awareness and critical fund raising. Determined to fund research and support services through events like annual frieze HD which raise more than 400000. Dollars last fall. In hopes of helping families just like Justin's in Texas. Once you have Huntington's. You are part of a much larger family you know anybody out there who who who once again involved in join that family Wheeler. We're ready when we're ready come and hang out that. For drew people. Our thanks to the porters and to Justin Furstenberg for sharing their stories you can find more resources on Huntington's at each TSA dot pork.

This transcript has been automatically generated and may not be 100% accurate.

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