The following was submitted by Alison Penuel-Mahoney (@alimahoney3):
What has your experience been with lymphedema?
I was diagnosed with Lymphedema when I was 17 years old.
I had a swollen left ankle and my sister said “I never thought you had cankles” which then I responded well it’s just one and I’m not sure why it’s swelling up like this because it doesn’t hurt. Then I told my parents and went to the doctor. After about 3-5 months Lots of doctors offices, poking and prodding and I was finally diagnosed with lymphedema. That was in 2004, I’ve had Lymphedema for going on 16 years.
How does lymphedema impact your everyday life/routine? How does it impact your career or activities?
My positive self always said, “It hardly affects my life,” but truly I have spent hours upon hours of the past 15 years learning how to care for myself.
My positive self always said ‘It hardly affects my life,’ but truly I have spent hours upon hours of the past 15 years learning how to care for myself.– Alison Penuel-Mahoney
I’ve moved around to different cities for different jobs or for my husbands work. In each city I have had to research and find a new Lymphedema therapist. In some cities are easier than others but it’s always a challenge! Most recently it took me about 6 months which was the longest process thus far.
Everyday I get up unwrap my leg from the night before and put a new stocking on, most mornings I work out, then new stocking after a shower, and then some days I’m more swollen so I’ll wear an extra Garment, wrap or wear a circaid bc the bottom half of my leg tends to swell more. Then when I’m done with work and home for the night I try to pump my legs (lymphapress pump)
In total On days I pump it takes me about 1.5 hours with everything combined. It’s a pain but I’ve had this for so long and figured out what works for me so yes it’s a lot of time but it’s better for me to dedicate the time to my leg than to let it go and try to make up for it later … which we all know doesn’t work.
How do you feel you fit in with the lymphedema community?
I have no clue. I just live my regular life and try to share with others to try to help them. I was diagnosed when there was no “social media” so I felt very alone and had to overcome a lot of embarrassment… and someone can see me being strong/confident and if it helps them be strong and confident and do things to take care of their leg then I feel like I’m doing something right with my life. I just don’t want others to feel so alone like I did.
I just don’t want others to feel so alone like I did.– Alison Penuel-Mahoney
Have you ever met anyone else with lymphedema?
Yes! I have made a point to reach out to others and see if they will meet up with me! So far in person I have met 5 people an older woman when I wa s first diagnosed- she had bilateral lLymphedema in her legs, then I met a girl in NYC with it who had just been diagnosed, then I met a girl locally where I live now, and I met Amy Rivera who started ninjas fighting Lymphedema; she does a ton with the LE community. She has a very interesting story and is very inspiring! And I met two other girls out in LA while I was there for my consultation with Dr. Granzow. I have met others over the internet which is a lot more!
How does lymphedema affect your close friends/family members/relationships, if at all?
My family is supportive and my husband is soooo supportive which is great. Even when I have bad days and cry about it he still is a great cheerleader and helps me along.
What kind of treatment do you undergo for your condition?
MLD, CTD usually about once a year or every other year. I have SAPL surgery scheduled with Dr. Granzow on March 4th so I’ve been prepping for that. Mostly just trying to keep my swelling down.
I wear a juzo custom flat knit stocking. It keeps my leg down so much better than circular knit I wish I switched years ago. I also have a Jobst Relax night time garment which I really like bc it’s so soft and doesn’t irritate my skin.
What do you wish others knew about your condition?
I wish they could recognize it. “Oh that girl has compression on she probably has Lymphedema.” I wish they could make the connection, but there is such a small amount of education dedicated to lymphatics so even doctors sometimes don’t know what to do with me.
I wish they could make the connection, but there is such a small amount of education dedicated to lymphatics so even doctors sometimes don’t know what to do with me.– Alison Penuel-Mahoney
How often do you discuss your condition with those outside of the lymphedema community, if at all?
I am open about it so if someone asks I am happy to discuss it.
What has your experience been with the health care system?
I’ve had really good experiences and really bad experiences. My husband is in the military and I am very lucky the doctors have been very caring and understanding of my condition. They have helped me find the resources I need. In addition to this our insurance is paying for surgery which I really feel so grateful for.
What would you like to see for lymphedema within the next few years?
Mostly coverage for other people. There are a ton of people I talk to who can’t get stockings paid for or the care they need. Also I like to see more doctors knowledgeable of the condition. It’s really sad when I go to the doctor and I know more about my condition than they do.
Are you involved with the lymphedema community (in terms of fundraising, volunteering, attending events, etc.)?
I am trying to be. I own my own business and keep pretty busy with that but I am making an effort to do my part.
How do you feel about the lymphedema community? What are its areas of strength? Are there any areas that need improvement?
I think as a whole it’s pretty supportive. Again I’m really not that involved so from what I’ve experienced it’s been positive.