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World Scleroderma Day 2018: Families open up about supportin

2018-06-29 来源:未知 责任编辑:媒体合作国际文传 点击:

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  • Boehringer Ingelheim provides platform to families and loved ones of people living with scleroderma with new, insightful stories, sharing ways to cope with and best support a loved one living with this little known disease
  • “I think the disease has brought us closer to each other… I can’t change the future but you have to look forward and don’t just see the downside in life.” – Juan, whose wife Monica has scleroderma
  • Gallery of videos and portraits, providing more information about the impact of this rare disease at www.morethanscleroderma.com
INGELHEIM, Germany -- (BUSINESS WIRE) --
Boehringer Ingelheim today reveals a new collection of unique, personal stories and portraits from family members supporting people living with scleroderma. The collection is part of the global ‘More Than Scleroderma’ initiative developed by Boehringer Ingelheim, with support from patient organisations, to raise awareness of this rare condition and provide information and resources for those affected.
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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