The following was submitted by Cam Ayala (@camronayala):
What has your experience been with lymphedema?
I was born with lymphedema but my swelling did not start until I was 11 years old after I had a bone biopsy on my right knee. My swelling is concentrated to my right leg slightly above the knee up to the hip.
How does lymphedema impact your everyday life/routine? How does it impact your career or activities?
Lymphedema does not take any days off, so it is a constant battle against gravity to make sure the fluid is moving upwards. This requires daily maintenance of several different compression modalities ranging from aquatic therapy, Compression garments, and using a compression pump like the LymphaPress. Because I have had several bouts of cellulitis and other infections in my right knee it is required me to be extremely compliant with all of these items in my compression ecosystem. I also have to be mindful of not standing too long on my feet but also still moving enough to not allow my muscles to weaken.
How do you feel you fit in with the lymphedema community?
Given my profession as a Compression Therapy Consultant for Lympha Press and the social platform that I have, as well as my ambassador role with LE&RN – Promoting and serving the Lymphedema community is a daily routine for me.
Promoting and serving the Lymphedema community is a daily routine for me.– Cam Ayala
Have you ever met anyone else with lymphedema?
Yes, with my new profession I get to meet fellow Lymphedema patients every single day.
How does lymphedema affect your close friends/family members/relationships, if at all?
It has impacted past relationships because when you are recovering from major surgeries as a result of your lymphedema, your loved ones become more so your caretakers. I also have to be careful about who I decide to date or let into my personal life as they may not be adequately prepared to handle being with someone who has a chronic disease like Lymphedema. Most of my very close friends are very understanding with some of the physical limitations that I have due to my lymphedema.
What kind of treatment do you undergo for your condition?
I perform self manual lymphatic drainage, as well as see a certified Lymphedema therapist about once or twice a month. I enjoy aquatic therapy in the pool, I wear a 20 – 30 mmHg compression garment during the day, the JoviPak nighttime garment, and use my Lympha Press pump every evening to manage my lymphedema.
What do you wish others knew about your condition?
I wish the other people knew that it is not a cosmetic condition but a chronic disease with no current cure.
I wish the other people knew that it is not a cosmetic condition but a chronic disease with no current cure.– Cam Ayala
Though it may not appear that my entire leg is swollen all the time, I do experience daily pain that I have learned to Mask.
How often do you discuss your condition with those outside of the lymphedema community, if at all?
With my new role as a compression therapy consultant, I talk about lymphedema every single day with physicians, certified lymphedema therapist, and with other Lymphedema patients.
What has your experience been with the health care system?
Fortunately, growing up in Houston, Texas I have been able to access any of the top wound care and lymphedema specialist, but it still took me over a year and a half to get my ignition all diagnosis of Lymphedema when I was 11. I’ve had several highly reputable orthopedic oncologist from the year 2014 through 2017 miss diagnosed me with chronic osteomyelitis and wanted to perform and above the knee amputation without considering my pre-existing condition, and lymphedema.
What would you like to see for lymphedema within the next few years?
Better insurance coverage for garments, pumps, and treatment such as surgeries and MLD sessions. Though a cure would be ideal, it is not realistic for the for seeable future because it is a very complex condition but does not have a considerable amount of research dedicated to the short and long-term success of treating this disease.
Are you involved with the lymphedema community (in terms of fundraising, volunteering, attending events, etc.)?
Yes, LE&RN, Brylan’s Feat Foundation, CampWatchMe, Lymphedema Seminar, American Vein & Lymphatic Society, LymphieStrong, Lymphedema Facebook Group, National Lymphedema Network.
How do you feel about the lymphedema community? What are its areas of strength? Are there any areas that need improvement?
Overall there is still a lot of misinformation part of it is what is being trained at the certified lymphedema therapy schools. We need more clinical studies and research/curriculum being presented to all medical school students as well as early as high school biology.
We need more clinical studies and research/curriculum being presented to all medical school students as well as early as high school biology.– Cam Ayala
There are great support groups online repeople can vent and gather inspiration from one another so that momentum needs to carry-on.
What needs are underserved in the lymphedema community? What kind of people do you feel are underrepresented or under appreciated?
The underserved or the elderly patients who have been misdiagnosed a vast majority of their life or the patients who have been diagnosed but do not have good health care/insurance coverage because Lymphedema requires constant maintenance which can be very expensive for treatment and garments.