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By Matthew Santamaria (msantamaria@hdsa.org

Madison Shurlow is an Occupational Therapy student at Grand Rapids Community College and Huntington’s disease (HD) has played a big part of her young life. HD is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure. 

On her father’s side, Madison’s grandmother was diagnosed with the gene that causes HD along with three out of her four children in 1996. 

In 2009, Madison’s father tested positive for Huntington’s disease.  

“He was running his own trucking business,” said Madison. “My dad was always very active, between running his own trucking business, coaching his kid's sports teams, and being on the lake. HD took all of that away from him much too early. Soon after his diagnosis, he had to sell the business due to health problems with HD.” 

The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Symptoms include personality changes, mood swings, depression, impaired judgement, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss. 

“The cognitive symptoms took a toll on my father and our family very early,” Madison explains. “Random outbursts, hallucinations, and anger tore apart my dad. Then, he started to have balance issues and he started falling and tripping making it difficult to keep his active lifestyle going. He slowly lost all his independence; losing his ability to drive, cook, perform tasks such as brushing his teeth, shaving, personal hygiene, and eventually walking and eating.” 

Nine years later, his health continued to decline as HD was affecting his daily activity as well as his dependency. For three years, Madison was living at home taking college classes. She and her mother were caregivers for Madison’s father as her three brothers and one sister helped when they could. 

In August of 2018, Madison quit her job to take care of her father full time so her mother can continue working. One month later, her father agreed to have hospice care and keep him comfortable. After this, Madison’s mother stopped working and stayed home with Madison to help take care of Madison’s father. 

“He spent his last couple of years restricted physically and mentally, and eventually came bedbound towards the end of his life,” said Madison. 

In October of 2018, at the age of fifty-eight-years-old, Madison’s father passed away due to complications from HD. 

“HD took our father away from us much earlier than any of us realized,” Madison explains. “Through his journey with HD, my dad never lost his love for his family. We are so thankful for the life my dad was able to live and that we are living now, and remember that it can always be worse so be thankful for what you have.” 

However, her HD journey is not over for Madison and her siblings. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. 

Madison and her three brothers wanted to be tested for HD. However, her sister has not tested. The decision to get genetically tested is difficult to make. Each year, 5-10% are tested. It is never the right or wrong decision to be tested. There are people that see no benefit in knowing that they will develop the disease while others want to know in order to make informed choices about their future. It can take up to several weeks to receive your results from the genetic testing center. 

Then, Madison, her two brothers, and sister tested positive for the gene that causes HD. One brother has not been tested yet.

“We are all very thankful to not be showing any symptoms at this time,” said Madison. “It was a shock to our family and was hard to put into perspective. Since then, we have all turned those feelings into strength to continue to be healthy, bring attention to HD, and most of all, and continue to be hopeful for a cure. We have learned to embrace this disease, accepting what we have and using that as a positive force to bring attention to HD. Through my journey so far with HD, I have been so thankful for family, friends and the support they bring me.” 

Madison and her family continue to spread HD awareness with the HD Community. The family has helped raise money for the HDSA’s Team Hope Walk in Lansing. The Team Hope Walk Program is HDSA’s signature grassroots fundraising campaign designed to provide hope and support for those touched by this devastating disease. 

In 2017, Madison’s mother ran the New York City Marathon with HDSA’s team.  

Madison has a message for the HD Community: 

“Keep fighting, be positive, hopeful, and most of all, keep laughing. One thing that has kept myself and my family so optimistic about this horrifying disease is our ability to laugh, and this is truly what makes us keep moving.” 

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Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain.  It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 41,000 symptomatic Americans and 200,000 at-risk of inheriting the disease. In less than 10% of cases, juvenile Huntington’s disease (JHD) affects children & adolescents. JHD usually has a more rapid progression rate than adult onset HD; the earlier the onset, the faster JHD progresses. HD is described as having ALS, Parkinson’s and Alzheimer’s diseases – simultaneously. HD is characterized by a triad of symptoms, including progressive motor dysfunction, behavioral disturbance and cognitive decline. 

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families. 

To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call 1(800)345-HDSA. 

This is a story featuring a personal experience with Huntington’s disease. If you would like to have your story told please contact Matthew Santamaria at msantamaria@hdsa.org