Heya! My name is Sarah and I’m a Lymphoholic. Yes, I admit I have a huge problem with lymphedema. The problem is not that I have the condition myself… It’s that I love talking about it and learning all there is to know! You could say I’m slightly obsessed with lymphedema and that’s fine- because you are totally correct!
The inspiration to create My Lymph came following the success of our positive people project, Chronically Motivated. The response was overwhelming and showed me how strong and courageous people were who lived with this condition. We all had the motivation to kick it in the butt and live our best lives with lymphedema… but we were all kind of clueless on how to do this!
This struck a personal note with me and made me think a lot about how I felt in those early days of being diagnosed with lymphedema. Guys, it’s tough. We all know that desperate, dread-filled emotion of not being able to see a light at the end of the tunnel. Of feeling trapped and helpless to get out of the lymphedema hole. I compared those early days to now and realised that I had come a long way mentally. I was quite surprised to realise that I felt okay about having lymphedema and actually felt liberated from that person I used to be. The question I started asking myself was, “How did I break through to the other side of this lymphie nightmare?!”
Since my diagnosis, I have educated myself daily on lymphedema and how to manage my leg better. I was determined to arm myself with the best knowledge and tools and give myself the best chance to succeed. I did this by speaking with experts in the field- physiotherapists, surgeons, garment fitters and patient advocates. I also spent hours and hours scouring the internet, reading journal articles and putting little pieces of information together to make the bigger picture.
The problem was, that finding information about lymphedema was extremely difficult, sparse and time-consuming. There was no central place to go to learn about this condition. Also, the majority of information was very medicalised and had little advice to give me in regards to managing this condition within my active lifestyle!
What I’m trying to say is that it took me years to arrive at the point I am today and this is why I created My Lymph. I want people to have immediate access to important information so that they have control and power back in their lives. I want people to have real, tangible solutions to help manage their lymphedema better. I want an online reference that people feel confident in, which delivers relevant and up-to-date information on lymphedema.
Bringing lymphedema into the 21st century
It’s easy to get frustrated at the lack of lymphedema resources out there, particularly when you compare it to other chronic conditions that have huge online information platforms to help people manage their condition. The good news is that everything needs a starting place- and our answer to this is My Lymph!
MyLymph.com is a world-first lifestyle platform, designed exclusively for people living with Lymphedema. We provide an online space that gives people access to an extensive range of resources, including; real-life stories to motivate and inspire, information about the latest technologies and treatments for LE, plus guidance on topics such as Physiotherapy, Fitness, Wellness and Nutrition.
We want to connect the millions of people worldwide that live with this condition and provide them with equal access to holistic, up-to-date information to enable them to live better lives with Lymphedema.
The problems we seek to solve are complex and require the coordination and focus of many people – governments, communities and individuals around the world. We cannot succeed alone, but together we can work towards creating a world where we can all live better with LE.