Welcome to the Lymphie Strong blog. If you have lymphedema, always remember that you are braver and stronger than you think. You are not alone with this disease.
First of all, Lymphie Strong is dedicated to my father, affectionately known as Pete, who lived with primary lower extremity lymphedema of the left leg since the early 1970’s. He was the strongest person living with it that I personally knew, and my hero in the daily fight against lymphedema. He lived with LE for over 4 decades with the first 24 years being completely undiagnosed.
This personal blog was created in September of 2015. Sadly, my father passed away on June 29, 2016 from cancer. While I am devastated at the loss of my father, I am comforted that part of his legacy will live on in helping others with lymphedema.
I was born with a form of genetic Lymphedema called Lymphedema–distichiasis syndrome which presented in 1994 in one leg, but eventually spread to both legs (bilateral lower extremities). Although I was aware that I was primary, I did not know about being this specific type and the connection between my eyelashes and my legs. Since this is so rare, I will also post my personal journey in managing it.
On my paternal side, I am the 3rd generation in my family to have this incurable condition. My grandfather was also bilateral like me. I also have an Uncle and two first cousins currently living with LE.
It important to note that my experience comes from both sides of the spectrum, as I have been mild, then swollen, and have subsequently successfully reduced my swelling. It is physically and emotionally painful. Everyone is unique though. There is no “one size fits all” solution or experience with lymphedema.
Support Communities & Social Media
As part of this journey, I have expanded the support of this blog into lymphedema online support communities.
Lymphie Strong is first and foremost about a sense of community and grassroots efforts and initiatives. We want to help empower you with the information and tools you need to have an intelligent conversation about your needs in terms of lymphatic health.
To reach as many people as we can who have little to no support in living with lymphedema. We aim to close the gap in finding information.
A safe, quality online lymphedema support group for patients, caregivers, and therapists which closely aligns with an in-person support group as much as possible. Where members engage with respect and honesty free from ads, spam, and other online distractions not previously approved or part of scheduled collaboration events.
Please answer the questionnaire to join.
You may also find me on Facebook, Twitter, and Instagram under the same handle @lymphiestrong.
#MOVETHATLYMPH Challenge Series
With respect to The Lymphedema Running & Fitness Club, I founded and created the #MOVETHATLYMPH virtual challenge series which began in January 2017. It has now spread to over 15 countries worldwide. Our group has grown from less than 500 members to 2K in 78 countries around the world. Read more about this movement sponsored by Juzo® since 2017 in the guest blog for Juzo USA at A Message of Thanks and Motivation.
Lymphie Strong is an official Ambassador for Juzo® USA as part of a team of patient advocates from across the country. In this capacity we have presented our patient stories at the 2019 Power Symposium held in New Orleans in March. More recently we visited Juzo® Headquarters in Ohio to meet all of their wonderful employees.
Patient Education Series
Beginning in the fall of 2018, Lymphie Strong partnered with JOBST® USA in an effort to help our members become #PATIENTSTRONG in lymphedema education and knowledge. Knowledge is power. To date we have hosted two Facebook Live sessions on “Compression and The Science Behind Why We Wear It” & “Nighttime Compression Solutions.” The Official Lymphie Strong Inspiration Group was also instrumental in submitting questions for the recent Jobst Compression Institute Webinar featuring Dr. Nicole Stout. My father went 24 years without a diagnosis, so I know firsthand how critically important it is to be informed both as a patient and a family member.
This Fall you are invited to hear my patient story at the 3rd Annual Patient Lymphedema Symposium hosted by BIDMC/Harvard Medical School on Saturday, September 28, 2019 along with BSN Medical / JOBST USA. If you are part of the Official Lymphie Strong Inspiration Group for Lymphedema community, this is a great opportunity to meet other patients from your area and across the country, as well as fellow LE&RN Chapter patient advocates. Lymphie Strong is an official Ambassador for JOBST® USA.
Lymphatic Education & Research Network
Beginning in June 2017, I voluntarily serve as a TX Chair for the Lymphatic Education & Research Network. In March 2017, I hosted the inaugural Greater Houston Texas Walk & Fandango to Fight Lymphedema and Lymphatic Diseases. I am also a proud recipient of a LE&RN 2018 Advocate Award.
Last year I was honored to share my patient story at both the 4th annual California #LymphWalk in Santa Monica and Harvard Medical School and BIDMC host the 2nd Annual Lymphedema Symposium, Boston in November.
Please read my LE&RN guest blog, Silence, a guest blog post by Veronica “Vern” Seneriz.
In October 2017, I became a graduate of the Lymph Science Advocacy Program and most recently shared my LE Distichiasis patient story at the 20th Annual State of Georgia Lymphedema Education and Awareness Conference hosted by the Lighthouse Lymphedema Network.
Lymphedema Treatment Act
I have traveled to Washington, D.C. twice to lobby before Congress for legislation on behalf of the LE community. Our Facebook community is listed on the Lymphedema Treatment Act Resources site under Lymphedema Online Groups.
National Lymphedema Network
You are invited to hear me present “Motivation to Move: the Road to Reduction Starts with One Step” at the 2019 National Lymphedema Network Conference A Cerebral Experience: Making Sense of Lymphedema on October 26-28, 2019. This event will be held in Boston, MA.
This year I was one of 22 people nominated for the Happy Lymphedema Day Award on behalf of the NLN.
Join me in the race and fight for a cure for all of us. Together we can all make a difference.
Wishing you great lymphatic health,