The following was submitted by Berlange Presilus (@bellenge):
What has your experience been with lymphedema?
My experience with lymphedema has not been so bad at all in comparison to those with primary lymphedema. I developed lymphedema right after surgery. Those surgeries were intended to help with Klippel Trenaunay Syndrome.
How does lymphedema impact your everyday life/routine? How does it impact your career or activities?
It sucks! Seemingly harmless activities sometimes put me in a vulnerable condition. I avoid lifting, walking long distances and standing for a long period of time. Being a fashion model, lymphedema also restricts my ability to withstand shooting for a couple hours straight.
Being a fashion model, lymphedema also restricts my ability to withstand shooting for a couple hours straight.– Berlange Presilus
Sometimes it’s really tiring after a few poses (I like to jump and twirl).
How do you feel you fit in with the lymphedema community?
To be honest, I love that I am part of the conversation and I feel very privileged. Although I have received some backlashes about not fitting in because of the severity of my lymphedema, I feel right at home. I am owning the space and raising awareness the best way I can. Together, we are one.
I am owning the space and raising awareness the best way I can. Together, we are one.– Berlange Presilus
Have you ever met anyone else with lymphedema?
Yes! Quite a lot of people. I recently did a presentation at the Canadian Lymphedema Conference, held in Toronto, Canada.
How does lymphedema affect your close friends/family members/relationships, if at all?
It doesn’t anymore. They are managing just as I am.
What kind of treatment do you undergo for your condition?
I do light exercises and often massage my leg. Everynight I elevate my affected leg for 15 to 20 minutes before bed. I wear compression stockings 7 days a week for at least 95% of the day. I wear Jobst thigh highs.
What do you wish others knew about your condition?
It’s not contagious and lymphedema doesn’t define me.
How often do you discuss your condition with those outside of the lymphedema community, if at all?
I speak of lymphedema every chance I get. I feel like it is my duty to speak as much and as loud as I can until everyone gets the help they deserve.
I feel like it is my duty to speak as much and as loud as I can until everyone gets the help they deserve.– Berlange Presilus
What has your experience been with the health care system?
(Deep sigh). Long story short, I have not been so lucky. My experience with the health care both in the U.S and Canada has been terrible. I am actually terrified of the thought of visiting the doctors.
What would you like to see for lymphedema within the next few years?
I would love to see more people owning their truths outloud and speaking out. That will eventually encourage the changes we hope to see (media coverage, research, representation and the ultimate goal …..A CURE).
Are you involved with the lymphedema community (in terms of fundraising, volunteering, attending events, etc.)?
Yes, both lymphedema and Klippel Trenaunay.
How do you feel about the lymphedema community? What are its areas of strength? Are there any areas that need improvement?
I feel like there’s more to be done in terms of raising awareness and supporting each other. But the more we talk about lymphedema, the more people we can help understand it and potentially even have it diagnosed. I think the more awareness being raised, all the more others will feel empowered to also use their voices. Lastly, the more medical attention we will receive.
I think the more awareness being raised, all the more others will feel empowered to also use their voices.– Berlange Presilus