Activist and award-winning actress Madeleine Stowe recently went public about her late father’s battle with multiple sclerosis, revealing to fans that she’s nothing like the scheming Victoria Grayson who she portrays on ABC’s hit show “Revenge.” And this winter, Stowe will continue to share her inspiring story and insights about growing up in a family impacted by MS as she embarks on a tour across the country to meet people living with MS who will likewise share their experiences with the disease. The event s will feature leading neurologists, lifestyle experts and people living with MS who are taking action in their own unique ways.
Stowe’s life experiences with MS stem back to her father, Robert, a highly intelligent man who came from a poor family and virtually taught himself how to be a civil engineer. Stowe told E! Online that her father “had MS at a time when there were absolutely no treatments. He went from being a man who was walking, talking and standing to, in a very short time, being in a wheelchair.” It was crushing for Stowe, who saw the first effects of MS on her dad when she was no more than three or four years old, and all she and her family could do is watch while her father’s condition deteriorated.
While there was always the shadow of MS at home, there was also an unyielding devotion to care for her father. “I remember feeling moments of fury; I remember feeling moments of empathy,” Stowe told E! Online. “I remember feeling guilty going outside to play with kids because I always wanted to run back into the house to make sure he was OK.”
Decades later, there are now promising treatment options for people living with MS. Stowe is optimistic that new treatments for all forms of MS will continue to emerge and we will one day live in a world free of MS. “Advancing research and pushing science to new limits will undoubtedly improve the lives of people with MS,” Stowe remarked during a visit to the Society’s headquarters in New York City.
Stowe understands better than most that people living with MS, or those caring for a person with MS, can sometimes feel isolated. That’s why she plans to take the stage and connect with people in ways that have never been done before, in person and online.
Stowe believes she learned a great deal growing up in a family living with the daily challenges of a parent’s MS, and she wants other families going through similar challenges now to know that it is essential for parents with MS to communicate with their children and explain what is going on. She remembers vividly that when she was a child “I didn’t fully comprehend what he was going through.” Stowe feels that through her TakeActionMS.com program, families will find ways to communicate with one another that are comfortable and work for them.
Other advice Stowe has about moving forward when MS becomes a part of a family’s life is for them to make each moment they have count. “We all have so much to give. Reach out, ask people how you can help, and ask for help when you need it, too. The human spirit is incredibly strong, but we can’t go it alone.”
When asked about her observation that people often became uncomfortable when she was too honest about what it was really like growing up with a father who had MS, Stowe explained how important it is to be honest about what life with MS can be for a family, if we are ever going to be able to change that reality and speed research to end the disease.
“Back when my father had MS, Stowe shared, “people didn’t talk as much about what was going on. I remember feeling very prideful, and not letting my peers see that vulnerable part of me. We didn’t talk about the challenges, and I think the lack of understanding about the disease really fed into this silence and isolation that we felt.
Today, things are so different. I am extremely proud of the significant advances this community has made in the treatment and management of the disease, as well as the ways everyone now has to connect with one another. I think the advancements made in MS are in no small part due to people’s openness in speaking about the disease.”
Stowe concluded by reiterating how excited she is to formally join the MS movement and bring awareness to this disease through her current Take Action on MS program, sponsored by Genzyme, a Sanofi company.
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