Ok this is my German friend karina and me attempting the beginning of our new YouTube channel Nina and karinas battle We have decided together to make a video diary of our daily battles we face living with EDS, and a potentially fatal complication called CCI. We have quite bravely, I think, been totally honest in our videos so far, we will not be sugar coating anything but still having the determination and humility to tell the world what a battle we face with suffering from a deteriorating brain stem injury every single day, the pain, the tears, the fight and the hope that we believe if we make these videos some good will come from this. There is no denying that both of us are fundraising also to quickly get surgery in the USA, but we have so much information on our websites to educate people and also a online petition is gaining momentum for more help to rare disease sufferers. If you are suffering from EDS and any of its awful complications and conditions and you would like to film your story to feature on our new YouTube channel, then please contact Karina Sturm who would be more than happy to speak to you. As us zebras always say, we have to keep fighting each day. Please take a look and also visit my website if you would like to donate towards my campaign. https://youtube/channel/UCkk_98NyY5Xb9pqYyC1LkhA
Posted on: Thu, 16 Oct 2014 05:25:49 +0000
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