Launched in 2017 with inspirational stories of scleroderma patients from around the world, this year the initiative has expanded to include personal stories of patients’ loved ones and family members. Their personal journeys, stories and insights contribute to the global discussion around the disease on World Scleroderma Day.
This year marks the tenth World Scleroderma Day, which focuses on bringing to light the experiences and struggles of patients living with scleroderma.
Juan, from Katrineholm in Sweden, has shared his story as part of the “More Than Scleroderma” initiative. His wife, Monica is living with scleroderma. He hopes to encourage and inspire other loved ones and family members who are supporting people with the disease, advising “You have to support them the best way you can, without it taking over their life.”
To see Juan and Monica’s video story and pictures alongside those of other loved ones and patients from around the world, visit www.morethanscleroderma.com
FESCA (The Federation of European Scleroderma Associations) has supported the initiative from the beginning. President Annelise Rønnow said:
“We are delighted that the ‘More than Scleroderma’ initiative has evolved to include perspectives and insights of close family members. We must not forget the huge impact scleroderma – or any serious disease – can have on families and friends. Talking about it openly and sharing experiences will help people learn to live with the disease and ensure that scleroderma won’t take their smile”.
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Please click on the link below for ‘Notes to Editors’ and ‘References’: http://www.boehringer-ingelheim.com/press-release/worldsclerodermaday2018