And NIH is now creating research categories specifically for lymphedema and for lymphatic diseases. Has there been progress made through your advocacy?Ībsolutely! NIH is working on a new, broader way of advancing lymphatics science and research by establishing a National Commission on Lymphatic Diseases. We’re all dealing with something, especially these days. Most of all, don’t withdraw from your family and friends. Get used to being in public so you can live your life to the fullest. As my other niece says, “Motion is lotion.” Other people’s stares may hurt at first, but they have no power to define us as people. However, hiding at home and living a sedentary life will only make things worse for your body and brain. Going out in public wearing a compression garment, especially when people aren’t educated about LE, can sometimes be more painful than the disease itself. For the day-to-day battle, I would advise gathering the courage to get out and live your life no matter the severity of your disease. The platitudes like “don’t lose hope” or “try not to get depressed” seem so cliche. To give someone meaningful comfort without physical connection is hard. That’s a very difficult question to answer. My little dog is jealous that they get attention before she gets her breakfast! Looking back over the course of your experience with lymphedema, what is your message to others who have been diagnosed more recently? I love coming downstairs in the morning to see the new buds. I found working with plants, digging my hands into bags of soil… it centers me. I also started raising miniature and full-size violets. If I can stop rushing, relax my shoulders, straighten my spine, breathe deeply, and focus on each little moment of completing a task, I have more confidence in my ability to live with LE. I try to pace myself so I don’t get too stressed. What do you do to maintain your health and energy? I managed to keep my weight off, which was a miracle. I don’t know what we would have done without her. My niece brought me food and helped me take care of the house. Like many, I was in quarantine for almost two years. I can afford the doctor’s visits, compression garments, and therapy. However, I’m luckier than most who have LE. ![]() I like to be self-sufficient, so before I know it, my arms are inflamed and painful. I’ve lost about 80 pounds over the last few years, which has helped a lot with the swelling in my arms, but I still wear my compression sleeves if I’m flying or if I'm doing strenuous tasks. "Other people’s stares may hurt at first, but they have no power to define us as people. ![]() NIH MedlinePlus magazine recently caught up with her to learn more about her lymphedema journey. The actress also explained how Margaret’s mother Barbara has an expanded role in the film, adding that she “felt like Kelly drew a mother that was on a parallel journey with her daughter and trying to be a mom, but also be a person.When award-winning actress Kathy Bates was featured on the cover of NIH MedlinePlus magazine in 2016, she spoke about her experience with lymphedema following her breast cancer surgery and her advocacy for those with lymphatic diseases as a national spokesperson for the Lymphatic Education & Research Network. “It was interesting to read it all these years later and feel how relevant it was and how funny it still is,” she added. Speaking to The Hollywood Reporter last year, McAdams noted that while she didn’t have an attachment to the book when she was growing up, “it was really nice to come to it later in life as a mom because I was playing the mother character and was viewing it through that lens.” “I read that when you don’t have any loved ones around, your life expectancy drops drastically.” “And how are you?” Bates’ character asks McAdams’ over a phone call. All the while, Margaret’s mom, Barbara, is going through an adjustment of her own in their new home with a mother who isn’t happy her daughter moved away and is careful to remind her every chance she gets.
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