A PROJECT OF PERNILLE HENRIKSEN & ANTONELLA RONCORONI
WITH PATRONCINION OF ITALF
“Friends in Water-Lymph Freedom” is a project born out of the joy of swimming together and the friendship between two patients with lymphedema. One with primary lymphedema and one with secondary lymphedema (after cancer treatment).
We meet weekly at the public pool in Varese to exercise in the water, release tension, compressions, support each other and do what benefits our lymphedema.
The water welcomes us, relieves us, gives us its massage, and conveys a beautiful sensation that is rarely granted to us: the feeling of freedom.
It was in the pool that the idea was born of wanting to capture and transmit through photographic shots our emotions of positivity and well-being.
With a group of patients with lymphedema, we were able to take beautiful photos in the water later developed on panels that we will leave on permanent display in the Recovery and Functional Rehabilitation (RRF) department at Circolo Hospital and Fondazione Macchi in Varese.
Our desire is to be able to communicate, to those like us who experience the limitations of this condition, the message that you are not alone.
Together we help each other, overcome fears, confront each other, rejoice and learn resilience.
The images are meant to be an invitation to join us, to take a “plunge together” and share and overcome obstacles and limitations.
The PROTAGONISTS
The protagonists of this project are patients – with primary and secondary lymphedema in the lower or upper extremities. A good representation of our community.
We are deeply grateful to all of them who, with joy and enthusiasm, participated and believed in our project from the beginning so that together we can pursue our intentions, which are:
raise awareness about lymphedema not only in our city but also across the nation and around the world;
to inspire other patients to do water exercises; to show our unity as a group of patients.
This is our message:
You are not alone … TOGETHER WE ARE STRONGER.
CONDIVISION AND TESTIMONY OF OUR EXPERIENCES
On November 24, 2023, we were invited to exhibit photos at the conference “Rehabilitation of Lymphedema: Lymphedema in the Oncological and Non-Oncological Patient, Knowing, Treating, Educating” organized by ASST Sette Laghi and held at Villa Cagnola with Dr. Anna Maria Grande, physiatrist and head of the RRF department of the Circolo e Fondazione Macchi Hospital in Varese, Italy, as scientific head.
To you goes our gratitude for supporting our idea from the very beginning.
During the conference, we witnessed our personal journey, recounting our experiences and explaining about our project. The positive response from the audience literally overwhelmed and excited us and gave us much hope and confidence in everyone’s willingness to help and support lymphedema patients in Varese.
More engagements are in the pipeline thanks to the new contacts made during the conference.
All these activities serve and will serve to bring greater awareness of our chronic condition in our city, and beyond.
Patients and caregivers in and around Varese can find us in our Facebook group “Friends with Lymphedema Varese” where we will organize appointments – not only swimming but also walks in our beautiful area or aperitifs.
The most important thing is that we are united, no one should feel alone in this battle.
THANK YOU
PATRONCINION OF ITALF
Thanks to the trust and support of the ITALF board of directors, we were able to carry out our project. We also thank Prof. Sandro Michelini for sharing it at this year’s conferences, thus spreading awareness of our mission, inspiring physicians and therapists to discuss the benefit of water activity with their patients.
PHOTOGRAPHERS
We thank Francesca Zambrini, a professional photographer from Varese, Italy, and Alessandra Benetatos, a systemic counselor, artist and researcher. With their shots in and out of the water and their curated processing, they managed to fulfill our wish: that of conveying ns emotions through images.
STAMP
We thank the generous willingness and donation of CSE Print Srl of Varese. Con la loro professionalità hanno saputo realizzare e stampare pannelli di alta qualità con gli scatti fotografici più significativi che potranno essere esposti alle pareti della sala d’attesa dell’Ospedale per molti anni a venire trasmettendo il nostro messaggio di positività e solidarietà a tutti i pazienti che si recheranno li per le cure.
PAZIENTI, AMICI, PARENTI, CONOSCENTI
TIPS & TRICKS (1)
feeling confident
Showing one’s body with lymphedema can be a real obstacle for some. We must raise our heads again and not be afraid.
Even if you don’t like your body and are afraid to show yourself, remember that others are also wondering about their bodies. And once in the water, no one can see your lymphedema. Joining with other patients can be an important support in feeling less alone and less fearful. As you gain self-confidence it becomes easier.
AFFLUENCE IN THE POOL
Ask the staff at the pool when you can expect lower turnout. Go take a look at your favorite time slot to check the amount of people in the pool and whether there is a spectator area where there might be people watching or waiting, such as for swim lessons. If you are concerned about stares from others, this will give you an opportunity to start when there are fewer people in the pool and locker rooms.
TEMPERATURE
For some patients, heat and humidity can adversely affect edema. Ask the pool staff about the temperature of the water and environment so you can make the right decisions about the pool you choose to attend. Usually the kiddie pool is slightly warmer than the larger, deeper pool. If you are planning to walk in the water in the smaller pool, you need to take the temperature into account as well.
TIPS & TRICKS (2)
POOL SIZES
If you are concerned that someone might accidentally scratch or kick you on the leg or arm with lymphedema, check that the lanes are wide enough and how many people can swim in a lane. Some pools have lanes for faster swimmers, so if you are a slow swimmer you may have to stay in the lane next to the edge. If you want to jog water, a deeper pool is required.
CURSES
If you are not an experienced swimmer try Water Zumba, Water Biking, Water Jogging, Water Aerobics classes. There may be classes for seniors, people with physical disabilities and who need a ramp or support to get into the pool. Again, check which pool they are held in, the water temperature, and the area.
TIPS & TRICKS (3)
PROGRAMME
Depending on your level, stamina and interest, you can create your own program with different styles of swimming, walking or other exercises. There are also specific exercise programs for people with lymphedema. Both for the arms and for the legs. You can search for them online. The important thing is to move, to move the body and the lymphatic system. It is also very helpful to self-massage in water from the bottom up. Water provides natural support and reduces the impact on the joints. It helps improve circulation and strengthens muscles.
HABITATION
Spend some time choosing the right swimsuit. It can be a one-piece or two-piece swimsuit (for women) or a loose-fitting or tight-fitting, boxer or brief model for men–there are many options. You can have tops and shorts/skirts or bathing suits to hide scars or body parts you want to cover. Or swimsuits that hold the implants firmly in place. There are also swimsuits with zippers that are easy to put on. If the swimsuit fits well and accentuates your shape and skin color you will feel more confident. If you swim as a physical activity, I recommend choosing a dedicated brand that hugs your figure more and has chlorine-resistant fabric so it can be washed often without fading.
TIPS & TRICKS (4)
EQUIPMENT
Check if the pool has swim boards and belts that you can borrow or if you can/should bring your own.
ACCESSORIES IN THE POOL
Swimming cap (mandatory in the pool) goggles, flip-flops, microfiber bathrobe for going from the pool to the locker room, a “mat” for changing, gloves for wearing compression. A plastic bag for all wet items.
Accessories at the beach
Rubber booties, extra towels (or something to dry between your fingers) fresh water to rinse off if no showers are available, aloe vera skin care cream or gel, zippered bags to shelter socks from sand.
TIPS & TRICKS (5)
COMPRESSION
This is an important point and you need to find what works best for you. Some patients prefer to be with compressions even in water, others without, for different reasons.
Water has a draining and massaging effect and provides natural compression. But each patient should assess his or her own situation, or consult a physical therapist for advice.
After showering, dry the leg/arm and toes thoroughly. Use an old sock and then either put another one on top or change it directly when you get home. Locker rooms are usually quite hot and skin tends to sweat for a while longer after showering, making it difficult to wear socks.
So remember your gloves and sock threader if you use them.
If you have a night brace or wrap you can wear that all the way home and then dry and take your time putting the brace on.
HEALTH CARE
It is very important to make sure you have no cuts or wounds. Skin care is key, so make sure to moisturize it very well with neutral creams and/or lotions.
You can use a body oil on your limbs and massage it in well to let it penetrate before entering the water, this way the skin stays protected and hydrated in contact with the chlorine.
On the way out, in the shower, use a neutral cleanser and then a cream – make sure the cream is completely absorbed – before putting on the compression.
A PROJECT of PERNILLE HENRIKSEN & ANTONELLA RONCORONI
IMAGES MAY NOT BE COPYED AND USED WITHOUT PRIOR CONSENT
