The following was submitted by Amy Rivera (@thisisamyrivera):
What has your experience been with lymphedema?
I was born with primary lymphedema. It started from birth. The entire right side of my body was twice the size of my left side. The swelling went down after a few days except for my right leg, which stayed swollen.
How does lymphedema impact your everyday life/routine? How does it impact your career or activities?
Before 2013, I never met anyone with lymphedema nor did I know that was what I had. I hid my leg from everyone. I made excuses as to why I wouldn’t participate in activities such as camping etc. I even entered a beauty pageant in hopes to change my identity. I was a nurse at one point, but due to the swelling, I couldn’t work anymore. This shattered my heart. All I ever wanted to do was to help people and I was lost after I had to give up my passion. Once I was diagnosed, I began to open up about my leg and dropped the skirt and started wearing pants.
All I ever wanted to do was to help people and I was lost after I had to give up my passion. Once I was diagnosed, I began to open up about my leg and dropped the skirt and started wearing pants.– Amy Rivera
This led to me skydiving, swimming, working out and living life. The complete opposite of who I was.
Have you ever met anyone else with lymphedema?
I met someone like me in 2015. This was the first time I ever met someone with lymphedema. The picture is attached below. This was an emotional experience for me. I finally felt at peace knowing I didn’t cause this, that my mother didn’t cause this and that there were others like me.
I finally felt at peace knowing I didn’t cause this, that my mother didn’t cause this and that there were others like me.– Amy Rivera
How do you feel you fit in with the lymphedema community?
I respect the lymphedema community because I understand what drives it. I understand the sense of community, compassion and safety net it can be for people. I’m also aware of the dangers it can bring such as negative judgments from the lack of knowledge and etc. You will find this in every community, not just the lymphedema ones. It is the nature of the social media beast. Just be aware. I personally have a different view from most. I see the community in a patient view, Executive Director view and a philanthropist view. Hence, why I started Ninjas Fighting Lymphedema Foundation.
What kind of treatment do you undergo for your condition?
I had the LNT in 2013. This surgery wasn’t as successful as it could have been due to the amount of fibrotic tissue. We don’t know what we don’t know and this was a newer procedure at the time. I knew this going in and I offered to be the guinea pig. That’s how desperate I was for relief. In 2016, I had my first Suction Assisted Protein Lipectomy (SAPL) with a doctor here in St. Louis who is no longer practicing. I saw little to no change. In 2018, I finally made it to the doctor that changed my life. I had the SAPL with Dr. Granzow. He removed the fibrotic tissue, 16 inches of dead skin and gave me a life I dreamt of. Do I recommend this approach? No. We are much further along now and there are several resources out there to help you with the decision process for surgery. I should’ve gone to Dr. Granzow from the beginning. I wear a class 2 and class 3 custom compression garments. I still see my therapist as a health routine more than anything and I wear night time garments. Just because I have the surgery doesn’t mean I’m cured. That is the biggest misconception people have. Surgery gave me a pain free life not a cure.
What do you wish others knew about your condition?
I wish everyone understood the dangers of developing lymphedema. You don’t have to be born with it or develop cancer to have it. It can arise from any form of injury, infection, bug bites and etc.
You don’t have to be born with it or develop cancer to have it. It can arise from any form of injury, infection, bug bites and etc.– Amy Rivera
Please see an interview with a patient we helped. She developed it from being pushed down a flight of stairs.
How often do you discuss your condition with those outside of the lymphedema community, if at all?
I’m a walking billboard for lymphedema. I live, work and breathe the word. I educate family members, friends and strangers. A few doctors here and there as well. My goal is to educate others regarding the risk of not understanding the malfunction or missing lymphatic system. After all, everyone is supposed to have a lymphatic system and they need to know what it does just as they know what the heart does. They are equally important for survival.
What has your experience been with the health care system?
You really don’t want my answer regarding the healthcare system here in the United States. I’m not pleased with it at all.
What would you like to see for lymphedema within the next few years?
I would like to see 7 billion people understand what the lymphatic system does just as they do with other systems in our bodies.
I would like to see 7 billion people understand what the lymphatic system does just as they do with other systems in our bodies.– Amy Rivera
I work closely in the lymphedema community but it is time to educate outside of that community as well. We must be brave enough to share our pictures, stories and voices in order for this to happen. That is where my focus is at the moment.
Are you involved with the lymphedema community (in terms of fundraising, volunteering, attending events, etc.)?
Yes, I’m involved with several lymphedema groups, communities and other non profits. If we work together, we can reach a vast number of people.
How do you feel about the lymphedema community? What are its areas of strength? Are there any areas that need improvement?
I love the private groups but I must admit I get sad when lymphedema fighters are too afraid to share publicly. I completely understand why they feel uncomfortable and unsafe to do so but my heart breaks for them. I remember being there and when you open up, there is a sense of freedom. This is even more of a reason to share my journey. Again, we must be brave.
I remember being there and when you open up, there is a sense of freedom. This is even more of a reason to share my journey. Again, we must be brave.– Amy Rivera
What needs are underserved in the lymphedema community? What kind of people do you feel are underrepresented or under appreciated?
Therapists are often underutilized. They are our first responders. This is why Ninjas Fighting Lymphedema just recently partnered with LANA and KLOSE training to help therapists become certified. I never felt misunderstood. This goes back to respecting the online community. You must be aware of what you say or type when replying to others. Remember, their journey isn’t yours so they may not be where you are.
Instagram: @thisisamyrivera @ninjas_fighting_lymphedema Website: winourfight.org