By Guest Blogger Pernille Henriksen
The story of the Lymphedema Children’s camp began in 2008, with a first Children’s Camp weekend in Montpellier, France. It was originally a collaboration between the vascular and lymphatic medicine department in Saint Eloi University hospital, Montpellier University, France and the national patient association “Association Mieux Vivre le Lymphoedeme” and later also the International Lymphoedema Framework.
They realised the special needs of children with lymphedema but also at the same time supporting the families who were seeking answers and reduce their feelings of isolation and helplessness.
Since the first national weekend camps in France it grew to an international children’s camp in 2012, including children and families from other countries, in Montpellier, and in 2017 in Candia Canavese in Italy.
I was honoured to be invited to join the fifth Italian Lymphedema Children’s Camp in the beautiful region of Piemonte organised by the physiotherapist Elodie Stasi of CMID (Centro di Coordinamento Interregionale delle Malattie Rare del Piemomente e della Valle d’Aosta, directed by Professor Dario Roccatello), her team and the Italian patient association Lymphido ONLUS. Organising such a camp is not easy, but it ran smoothly and professionally throughout.
We all arrived late Friday afternoon and the families were immediately greeting and embracing each other – rekindling since last summer. The children with lymphedema and their siblings seemed like they were back with their families – everybody surprised how much everybody had grown, asking how end of year exams had gone and admiring new hair styles. New families were immediately included and introduced to each other. In total 13 families and with the therapists and support staff we were 50 people. The youngest patient only 18 months and the oldest nearly 18.
We all got together in the meeting room and the program was presented while all the children were given bags of products, samples, gadgets and gifts kindly sponsored by the industry. A treasure hunt was organised for the children to get them all fired up and exited for the camp. And then we went for a true Italian family dinner celebrating one of the children’s birthday as well.
Saturday morning was an early start with everybody ready for Fitwalking at 8 am. We were introduced to this specific type of walking organised by Dr. Marco Pozzato who is a renal specialist and a team of nurses who works with him. As we were instructed on how to do it correctly and warming up, we got ready for a 2.5 km walk in the beautiful surroundings with the sun shining above us. A great start to the day.
The day progressed with a session on the lymphatic system and lymphedema by the surgeon Professor Francesco Boccardo from Hospital San Martino of Genova. This was a very educational session for both children and parents to learn more and to have the opportunity to ask questions to a specialist. It is often difficult in clinical settings to be able to speak freely and with the parents bouncing off on each other’s questions it seems a much more natural environment to absorb and comprehend this kind of information. And we all learned so much.
The subsequent session on k-taping was very practical and after a short introduction to the benefits and how to use it, by the physiotherapist Lorena Acquadro, the parents were handed out scissors and k-tape and got taping. With the support of nurse Fabienne Mourgues, from France and Elodie Stasi it was a very valuable way of teaching self-management. And who does not like a little bit of colour on those lymphie limbs!
After lunch we were all free to enjoy the facilities of the camp which included swimming in the pools, canoeing on the Candia lake, tree climbing or napping for the little ones.
In the afternoon physiotherapist Giovanni Farina offered a session on self-bandaging – either by patients themselves or by the parents. We were able to try lots of different products and could discuss among ourselves what we had tried, what worked well and what did not work. Valuable lessons passed on to one another. Bandaging is an important tool in self-management but here the parents and patients were able to try it in a safe environment with the guidance of the professional team and experienced users.
As the children ran off with their siblings the parents got together for a session directed by a psychologist who was also one of the parents. The parents had the opportunity to speak freely, but guided by thoughtful questions, and to bring out their frustrations and worries. As a patient myself this was very emotional but along with another experienced adult patient, we tried to explain it from our point of view, to bring peace and understanding. I understand the frustrations of the parents, though my children do not have lymphedema, I know how my parents felt during the days of lack of diagnosis, fear of infections, fear of progression and the question “why”. We only want the best for our children and coming together as parents, even though the children have completely different types of primary lymphedema, it gives them a sense of belonging – that they are not alone in this battle.
We finished the day with acqua-gym which is so beneficial for the lymphatic system and another lovely BBQ. All happy after the first intensive day in the camp.
Sunday morning, we started again with sessions on self-management. This time a discussion on night-time garments with a specialist in compression garments and then physiotherapist Rinaldo Caldirola showed us how to ensure correct pressure during manual lymphatic drainage. Subsequently Dr. Paola Coppo, dermatologist, from the Children’s hospital Regina Margherita of Torino, explained the importance of skin care, what products were available and suitable for children with lymphedema. She also took questions from parents with girls who were worried about hair removal. Again, perfect combination of practical advice with support from the clinicians.
The camp finished with lunch and some tears of goodbye – but all happy, full of renewed energy and motivation to better manage or self-manage the lymphedema of their children or themselves.
The main lesson for me was the spirit of unity, that together we can achieve more and become better patients by self-management or with the help and support from parents and siblings. We are not alone – despite how our lymphedema looks or behaves. Together we are stronger.
This was an extraordinary experience for me as an adult lymphedema patient. I am so grateful to have been able to participate and I thank Elodie Stasi, Lorena Acquadro and Fabienne Mourgues for allowing me to attend and the patients and parents for letting me in to their families.
For more information about the Italian Children’s Lymphedema Camp please contact Elodie Stasi on firstname.lastname@example.org
Thank you to the sponsors who provided gifts, product samples and financial contribution.
I have primary lymphedema in left leg which started at the age of 17. It took 3 years with intermittent and unexplainable swelling before I was diagnosed. After many years of neglect, denial and lack of managing my lymphedema I finally embraced it and started taking care of it. I reduced the size of my leg significantly, reduced the frequency of complications while increasing mobility all by rigorous self-management and with the daily support from other patients on social media such as the Facebook group Official Lymphie Strong Inspiration Lymphedema group. I am now a patient advocate working on empowering other patients to manage their lymphedema in the best way possible and raise awareness of the condition.
About Lymphido ONLUS
The patient association was created in 2016 by the parents of the children from the camp. They came together via Elodie Stasi as they or their children are patient of hers. Though this is a young and small association they are very dynamic and determined to disseminate and share useful information among the members, protect the needs and interests of the members, and raise awareness among the health care institutions and the managing bodies of the regional and national health care services. For more information or donations visit the website www.lymphido.it
About Primary Lymphedema
Primary lymphedema is a rare disease and defined as rare in Europe when it affects fewer than 1 in 2000 and 50% of rare diseases affect children . Primary lymphedema is a chronic progressive condition of which there is currently no cure. Often, patients with lymphedema lack an official diagnosis, are misdiagnosed or delayed in getting a diagnosis and therefore also a delay in getting the correct treatment. Furthermore, other underlying conditions may be connected to the rare disease and make it even more difficult to get a correct diagnosis. Inequalities and difficulties in receiving the care and treatments increases the financial burden on the patient and their families.