The following was submitted by Kristin G.:
What has your experience been with lymphedema?
I was born with lymphedema in both of my feet.
How does lymphedema impact your everyday life?
Some days I don’t think about it and I feel like life is just normal, but other days I realize that it has affected my every day life and routine. I wear OTC compression garments every day which can get hot, especially as I reach middle age hormones and hot flashes! I wear pants/jeans every day, even in the hot Austin summer. I don’t feel like I get enough support if I’m wearing shorts or a skirt. This limits things I can do outside especially in the summer because it is simply too hot.
Some days I don’t think about it… but other days I realize that it has affected my every day life and routine.– Kristin G.
How do you feel you fit in with the lymphedema community?
I did not realize there was a community until I saw Cam Ayala on the Bachelorette. I feel a little outside of the community as very few seem to have primary lymphedema.
Have you ever met anyone else with lymphedema?
Yes! Lots – they’re all in my immediate family!
How does lymphedema affect your close friends/family members/relationships?
As a kid, I was very guarded about it. I don’t think my parents knew how to help me cope with being “different” and so I was left on my own. I think this made it a bigger problem than it would have been had it been out of the closet, so to speak. I think this made me not want to tell my friends, which made me not as close to them as I would have been.
What kind of treatment do you undergo for your condition?
I use over the counter compression garments from Walmart. I plan on seeing a therapist for therapy, medical grade garment fitting and a pump as soon as things can go through my insurance.
What do you wish others knew about your condition?
I wish others knew how much “tired feet” can affect your stamina. At the end of the day, if my feet are sore or my legs are swollen, I am exhausted. I really think I am a morning person because that’s when my feet feel the best.
How often do you discuss your condition with those outside of the lymphedema community?
What has your experience been with the health care system?
I am the patient doctors are excited to see because they learned about lymphedema in school but have never seen a live case. This is annoying because they never have solutions, only curiousity.
I am the patient doctors are excited to see… they never have solutions, only curiosity.– Kristin G.
What would you like to see for lymphedema within the next few years?
Media coverage only because that is what seems to drive money invested in finding a cure, which is the ultimate goal.
Are you involved with the lymphedema community (in terms of fundraising, volunteering, attending events, etc.)?
I am just beginning to get involved.
How do you feel about the lymphedema community? Are there any areas that need improvement?
It seems geared toward secondary lymphedema. For me, I need experts on primary.
What kind of people do you feel are underrepresented in the lymphedema community? Have you personally ever felt misunderstood or isolated within the community?
Again, primary lymphedema is its own “brand” of lymphedema and although people with it are fewer in numbers, our needs are just as important. I do not feel isolated, but I still feel a bit apart.
… although people with [primary lymphedema] are fewer in numbers, our needs are just as important.– Kristin G.