My name is Sarah, I am a 32 year old Australian living life in the south of France with my husband and two small children. These days I work in the Sports Nutrition industry, where I am the UK Regional Manager for a large company (based in Monaco) that sells health foods and sports supplements. In the past I have worked as a model, an Elementary school teacher and also in the Motor Sport Industry.
I have lived with Primary Lymphedema in my left leg since April 2013; initially seeing signs of the condition when I was three months into my first pregnancy. I noticed some slight swelling in my left groin area and put it down to “normal pregnancy swelling.” However within a few weeks my whole leg had blown up and I knew something wasn’t right. After a few visits to the ER, blood tests, doctors assessments and ultrasound scans, the doctors were still unsure what was causing my swelling and basically told me it was just a weird thing that would go away after I gave birth. A few months after the birth of my daughter, I still had a very swollen leg and was eventually diagnosed with Primary Lymphedema.
I managed my condition to the best of my ability, doing all the right things (compression, bandaging, MLD), and my leg responded well. I would constantly ask my doctor if there was more I could be doing, or if surgery could help, but I was always told that surgeries did not exist and to just ‘live with it.’
It was around August 2015 that my Lymphedema suddenly worsened (during my second pregnancy) and I became really worried. I started to feel very isolated, depressed and like the only person in the world who suffered this condition. I decided to search on Instagram the hashtag #lymphedema to see what would come up. This was the moment things would change for me. I found a community of people, like me, who came from all the different corners of the world, who suffered from LE! They were asking the same questions as me, searching for the same answers, sharing information and supporting each other. Connecting with these people gave me hope, finally! It showed me that Lymphedema doesn’t discriminate; it doesn’t care who you are or what you do, because it can happen to anyone.
The information, support and guidance I found on Instagram was much more than I could find in my local community and from caregivers. Although it was wonderful, it also deeply worried me and made me question why our health system was lacking so badly in this area? Why didn’t my doctor know vital information that seemed so “common knowledge” amongst the people online? Why didn’t I have access to the same treatment and care as others did?
My online journey connected me with more and more people living with LE who were struggling, feeling hopeless and unaware of the treatment options available to them. Many people did not understand the basics of compression garments, how to correctly bandage their limbs or that there exists surgeries for Lymphedema that can greatly improves ones condition. It was very upsetting for me to know that people (including myself) were so clueless about how to manage their condition. This motivated me to take action and work towards changing this in the LE community.
These days, I am heavily involved in the Lymphedema movement by acting as a voice to change the way we talk about, perceive and treat this condition. I truly believe that we have come to a point in time that things must change. Caring for limbs with Lymphedema should be based on what individuals need, rather than what works best (or easiest) for the health and social care system to provide. Our already stretched health care systems are currently failing to deliver this; and the demands on it are only increasing. We urgently need to keep the conversation moving, to tackle the big issues and find solutions.
I am Chronically Motivated in many ways:
- Lymphedema Surgery Advocate- using my social media platforms (Instagram and blogging) I work to raise awareness of the current surgical options available to treat Lymphedema. I believe we should all be informed about the surgical choices available to us and its up to our caregivers to give us this information as soon as we are diagnosed with Lymphedema. Early intervention is they key to successfully treating Lymphedema, therefore patients need access to this information immediately.
- I use my own experience of surgery to promote awareness and share information on surgeries that a lot of people are unaware of. It’s a matter of raising awareness, not just amongst people who live with this condition but also our caregivers and doctors- to make them aware and give them the power to pass this information onto their patients. We also need to de-stigmatize the world of Lymphatic surgery, as tremendous results are being had and not recognized by the rest of the world.
- Advocate for raising awareness of congenital Lymphedema in Children- I find this an extremely interesting area of Lymphedema and am extremely motivated to help improve the lives of children at risk and who lack the financial means, access to basic materials and education to manage their lymphedema.
- Campaigner for change towards funding and health legislation for LE.
- Social media Lymphedema ambassador.
These days, I no longer feel like it’s the end of the world to have LE. Understanding my condition and discovering the treatment solutions that are available gave me back a sense of control. I will always have Lymphedema and that is okay, I accept this and am thankful to be given this path to walk in life.
I know the road to recovery is long and requires a lot (and I mean, a lot!!!!) of hard work and patience, but that is fine by me! I’m enjoying the journey and learning so much more I could ever have thought I would from this experience. I have met amazing people who have changed MY life and I know that by sharing my experiences I have changed other people’s lives. For this I am thankful.
Top 5 “cant live without” Lymphedema materials:
1) Toe caps- these help a lot to keep my toes from turning into little sausages.
2) MalleoTrain ankle support- seriously amazing for stopping the liquid build up around my ankle.
3) Jobst Relax night garment- very comfortable alternative to bandaging at night and easy to travel with.
4) Maxi dresses in the summer time
5) Knee high boots (with zips on the sides!) and tights in the winter time.
My best Lymphedema tip:
Recently I discovered the activity of Aqua Biking- it’s an exercise bike in the water. It’s a great alternative to swimming and combines the benefits of water sport and cycling to help with lymphatic flow.
Where to find Sarah: