Lympha Press Marketing Intern Sofia Long chats with Marketing and Communications Associate Alexa Ercolano about her experience representing Lympha Press as a volunteer at Camp Watchme earlier this summer. (Photos by Alexa Ercolano.)
SOFIA LONG: So, what is Camp Watchme?
ALEXA ERCOLANO: Camp Watchme is the first — and only — summer camp in the United States for children with lymphedema and their families. At camp, they learn how to manage their condition as well as meet others like them. They get a chance to feel like “regular” kids: They aren’t worried about feeling different.
Certified lymphedema therapists also volunteer and are each assigned to a camper, whom they work with throughout the duration of camp. Every morning and night the kids receive treatment for their lymphedema with their therapist, and during the day they do fun activities and attend educational workshops.
SL: Where is the camp located?
AE: Each year it changes location. This year, we were at the YMCA of the Rockies in Estes Park, Colorado.
SL: Did you enjoy Colorado?
AE: Yes! It was so cool to be up in the mountains. We saw so many large elk and prairie dogs! It was a great environment to be in for all the outdoor activities. It was perfect. The venue also had space for parents and caregivers to attend educational sessions while the kids were out having their fun.
SL: What group activities took place?
AE: The schedule was jam-packed, but it was a great mix of educational sessions and fun. We swam, hiked, had a lip sync competition (my team lost!), and did outdoor yoga one morning with the Rockies as our backdrop. We spent our last night of camp on Lake Estes, where we ventured out on pontoon boats and paddleboards.
A highlight for me was the opportunity to team up with another volunteer and talk to the kids about our experiences growing up with lymphedema. Despite their young ages, they asked great questions. So insightful!
SL: What role did you play at Camp Watchme?
AE: Kind of a “big sister” role. We adult lymphedema patients were like counselors: We played with the kids, kept them on schedule, and made sure they had fun while being safe. We also answered questions and gave advice from our own experiences as lymphedema patients.
SL: What is your favorite memory from camp?
AE: There are so many. I think my favorite memory was when we went out to a rock-climbing wall in the woods. There was a little boy, Hunter, who wanted to give it a try. He made it a few inches up and then started getting scared and shaky, saying he wanted to get down. A few minutes later, he said he wanted to try again. This time he made it a little bit further, but his nerves got to him and again he wanted to come down. Hunter ran to his dad, who is also a lymphedema patient, and they hugged. When they pulled apart, his dad touched his forehead to Hunter’s, so they were eye-to-eye and gave him words of encouragement. With fresh resolve, Hunter decided to try a third time — and got almost halfway up the wall!
I stood watching with his grandmother and we just held each other, happy crying. The whole experience was clearly outside of Hunter’s comfort zone, but he kept trying, getting further each time. So beautiful to see. Seeing these kids do things with their garments and their bandages and not letting their condition get in their way was incredibly inspiring.
SL: What role did Lympha Press play at camp?
AE: We had two PCD-52s with small leg and arm sleeves for the campers, and I brought my personal Optimal Plus and leg sleeves. I’m glad I did: A 13-year-old who was too tall for the provided leg sleeves was able to have a 30-minute therapy session with my pump. He and his family were really impressed with how easy the garments were to clean and put on. A few therapists and adult lymphedema patients tried my pump, too!
That I could talk casually with everyone as a patient rather than just as a Lympha Press representative was important: It was authentic and piqued their interest in Lympha Press. My favorite pump moment was during movie night when we ate popcorn and pumped together!
SL: How do you feel personally about your time at camp?
AE: Being able to go to the camp as a primary lymphedema patient was very healing to my inner child. To begin with, I’d never been to summer camp! To be able to go and watch kids with lymphedema running around as well as meeting lymphedema patients my own age felt amazing – like we were at camp having the experience that we never had as children. I roomed with two other adult patients, and we stayed up until one or two in the morning, talking about our feet and comparing compression garments. Just having that time together was so special. We got just as much out of camp as the kids did. I’m so grateful for that.
SL: How did this experience impact the campers’ families?
AE: Not only did the families learn a lot about lymphedema and its treatment, but they were able to see they were not alone. For parents to know that there is a whole community of support available to them – and that they can support each other – is so invaluable.
SL: Anything else you’d like to share?
AE: On the last night of camp, one little girl came over to me and said, “This is the first time that I’m not scared to talk about my lymphedema.” We held each other and sobbed. That’s what it’s all about, really, and to have Lympha Press support this work is so impactful.
We do more than just deliver pumps: We really are a company who genuinely cares about helping our patients, young and old. Words fail to describe how great it is that we support Camp Watchme, and I truly appreciate Lympha Press giving me the chance to represent us in 2022.
Watch this video scrapbook for more memories from Camp Watchme:
@lympha_press Lympha Press is a proud supporter of #BrylansFeatFoundation and their many initiatives, including CampWatchme! ????#Primarylymphedema patient and #LymphaPress team member @thelymphielife attended the second session and had a blast with the campers, their families, and certifiedlymphedematherapists. Take a peek at some favorite moments! ????#brylansfeat #pediatriclymphedema #lymphedema #bestfeatforward #lymphedemawarrior #lymphedemaawareness #summercamp
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