MS Kids Retreat in Romania

APAN Romania (the Association of Patients with Neurodegenerative Diseases) has organized the 6^th edition of the MS Kids Retreat Program between 29 August and 1 September 2022. The event took in Brașov county, in a fairy-tale landscape.

About the MS Kids Retreat

The MS Kids Retreat is a support program of APAN Romania. The event is dedicated to children and adolescents living with MS in Romania and is organised in partnership with the Clinical Hospital of Psychiatry ‘Prof. Dr. Al. Obregia’, the Children Clinical Hospital ‘Dr. Victor Gomoiu’ and the Romanian Society of Pediatric Neurology.

The event is held annually and encourages all the children and adolescents diagnosed with multiple sclerosis from Romania to participate together with 1 or 2 caregivers.  Children, parents, and specialized medical staff have had the opportunity to exchange information and to get a better understanding of how the diagnosis of multiple sclerosis is impacting and influencing the daily life of those affected.

The event gathered  55 participants: 19 children and adolescents living with multiple sclerosis, accompanied by 1 or 2 caregivers, neurologist, psychotherapist specialized in multiple sclerosis, as well as other young-adult patients with multiple sclerosis.

The objective of the MS Kids Retreat Program is to provide the necessary support to children and adolescents living with multiple sclerosis and help them become stronger and hopeful for what life has to offer.

The Importance of Communication Upon MS Diagnosis

The method by which this diagnosis is communicated by the neurologist plays a crucial role. The information provided in terms of understanding and managing the disease are also extremely important. The program embeds psychotherapy sessions with the aim of shortening the period of denial and anger, to the point where the diagnosis is accepted. The MS community in Romania offers moral support through social media platforms.

What Was the Feedback From the Participants?

The event received a warm welcome from participants, exceeding by far the expectations of APAN Romania. Read below some of the feedback received from the attendees:

‘We have left the MS Kids Retreat with the certainty that we can overcome any challenge! Now we have joined a community! Together we will find solutions!’

‘I have found out a lot of new information regarding the various treatments for MS and possible side effects. I have heard the amazing life stories of the other participants and met remarkable people…’

‘I have left MS Kids Retreat with a lot of new friends, both for myself and for my daughter. I have found out a lot of new information regarding MS and have received valuable advice during the psychotherapy sessions.’

Advocating to Meet the Needs of Children and Adolescents Living with MS

Similarly to EMSP, APAN Romania is also raising awareness and advocating regarding the unmet needs of the children and adolescents diagnosed with multiple sclerosis, as well as their caregivers including educational and financial support, mental health sustainability, support and adherence to the treatment, and general awareness of this neurodegenerative condition to reduce isolation and discrimination.

APAN Romania is reinforcing the need for psychotherapy sessions to be expensed by the government to both children and teenagers and their parents or caregivers.