Experience report: Medical compression for primary lymphoedema

Nicole Faccio suffers from congenital lymphoedema of her arms and legs. In the interview, she shares her experiences in dealing with the chronic disease and gives other sufferers tips for everyday life.  

Experience report: Nicole Faccio

"Compression stockings are not my enemies, they are my best friends – this change of mind changed my life!"

Nicole Faccio has lived in San Juan, New York and most recently in London. Born in Puerto Rico, she has suffered from swelling due to lymphatic malformations, primary lymphoedema, since birth. At the beginning of her treatment, cheerful Latina still had teething problems with her medical compression – today she can no longer imagine life without it.

Ms Faccio, you have primary lymphoedema of the arm and legs. Please give us a brief insight of the history of your condition.

"I have primary, i.e. congenital, lymphoedema with swellings all over my body due to lymphatic malformations. The swelling was first noticeable in my left arm, but soon appeared in both legs, face and abdomen. I was officially diagnosed at nine months old at Boston Children's Hospital."

How were you treated at the beginning of the disease? And how are you treated today?

"From the first diagnosis, my parents were educated about what is important with lymphoedema: Hydration, exercise, a balanced diet, skin care and medical compression care – hardly anything has changed to this day. Later I also added manual lymphatic drainage and bandaging to my routine. By following all this – my holy grail of lymphoedema management – and adopting a holistic lifestyle, I have regained my quality of life. I was able to keep my swelling in a moderate state – and finally do what I love to do."  

How do medical compression stockings support you?

"Compression is one of the most important components of lymphoedema treatment. I call my compression stockings my second skin. I can't go a day without them because my lymphoedema is so advanced. To be honest, I couldn't get my head around wearing compression every day for years at first. But after noticing such an improvement in my swelling with medical stockings, it clicked. With the consistent implementation of the therapy, I regained control over my life and realised: Medical compression stockings are not my enemies, they are my best friends – this change of mind was a turning point in my life!"

You are wearing mediven 550* from medi. What do you particularly like about the product?

"I love that the knit is very high quality and very robust - this makes the mediven 550* excellent for lymphoedema. But the best thing is the colours, I love them! All in all, my medical compression is made up of several components: Toe caps and thigh highs, and a stocking on my left arm. Therefore, the colour variety is very important to me. Customised medical compression care from medi is amazing: The products are available with many customisations to make them as comfortable as possible. The special knit also makes them very breathable – perfect for warmer days too."

Do you have any tips for other sufferers on how to integrate medical compression fashionably into outfits?

"At first it may feel strange to wear medical compression stockings, for example with shorts, sandals or short skirts. But: You will notice that they are actually quite 'normal' garments. Many people ask me about my look on the street and compliment me on my outfits – they don't see it as a restriction, but as a fashion statement. We live in a time where individuality is valued and celebrated – everyone can use this powerful thought for themselves."

To what extent does the support of friends and family play a role?

"Support is enormously important. But acceptance comes from within, not from others. Having a safe environment to express yourself helps to see the good and block out rejection – I've been lucky with all the great people that surround me." 

How well are you cared for by your attending doctor and compression specialist?

“Many sufferers spend years without a diagnosis or proper treatment because they cannot find a specialist doctor. The consequences: If left untreated, complications can arise. Fortunately, I have found great doctors and great compression therapists. But for lymphoedema patients, compliance with the treatment, self-help and networking with other sufferers remains key: It's the only way they can share, learn and progress."  

What else do you do to support your treatment? Do you have any tips for those affected?

"Lymphoedema is a chronic condition, so it is very important to prevent progression of the disease. The most important thing besides medical compression is a healthy and balanced lifestyle, combined with skin care and a conscious diet to maintain weight. Plenty of exercise, wearing compression of course, also plays a crucial role. A key component is keeping the lymphatic system in tip-top shape and minimising fluid build-up – and therefore the risk of infection, skin problems and restricted movement." 

You are already very active in patient education and are now one of the faces of the new trend colour campaign: What motivated you to share your story?

"No one should feel lonely because they are 'different'. There are many people in the same situation. This realisation changed my life. Therefore, I pass on my knowledge and try to close the information gap among the public. If I can change even one life with it, it's worth it!" 

The campaign focuses on authenticity – what makes you the person you are?

"My life experiences! My lymphoedema has shaped me – I am grateful for that, because it has given me a special attitude: I always want to be positive and act out of love rather than fear. And in doing so, I remain as authentic as possible. Being honest with myself has given me great freedom and strength – I want others to feel the same."  

The campaign motto is: "Discover your idea of perfect!", which means discovering yourself and feeling exactly right about who you are. What is "your idea of perfect"?

"For me, perfect can also be completely imperfect or asymmetrical – I try to find something positive in everything. Sometimes I can be very demanding, stubborn and a bit of a control freak – it's often exhausting. But I'm also very silly and don't take myself too seriously in order to make my fellow human beings smile. This balance helps me a lot with my lymphoedema management and is my own perfection!" 

Dear Ms Faccio, thank you very much for your personal insights and the nice interview!



*Intended purpose:

mediven® 550 leg:
Flat-knitted medical compression garment used for compression of the lower extremities, mainly for the treatment of disorders of the lymphatic system.

mediven® 550 arm:
Flat-knitted medical compression garment used for compression of the upper extremities, mainly for the treatment of disorders of the venous and lymphatic systems.