#MEAwarenessHour
One year ago, by writing ‘ACT’ (for ‘activism’) on her bed sheets with her finger, Mila asked us to speak and write publicly about her life with very severe #mecfs.
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One year ago, by writing ‘ACT’ (for ‘activism’) on her bed sheets with her finger, Mila asked us to speak and write publicly about her life with very severe #mecfs.
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It was a huge step for a very private teenager and a generous contribution to raising awareness for this horrific disease that is still gravely under-funded, under-researched, and too often dismissed.
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Since I have started to speak up, many parents (or brothers, grandmothers, etc.) from all over the world have contacted me to share the stories of their loved ones.
This has opened a door to a hidden world of suffering and neglect that I never imagined existed:
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This has opened a door to a hidden world of suffering and neglect that I never imagined existed:
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Patients – many of them teenagers or young adults – confined to their beds, existing in the dark, too weak to get up, eat, or even speak. Some in constant pain. Most without adequate medical care.
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Most troubling are those severely affected who do not have a family to care for them and who exist in shocking circumstances.
(Mila wouldn’t even be able to use her phone to call for help.)
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(Mila wouldn’t even be able to use her phone to call for help.)
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So, when I am writing about Mila and when my husband spends hours every day to advocate for research, it is never only about our daughter.
Acting on her behalf, it is also about Lina, Joseph, Lisa, Pip, Saskia, Lia, Sandra, Bastian (+), and many, many others.
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Acting on her behalf, it is also about Lina, Joseph, Lisa, Pip, Saskia, Lia, Sandra, Bastian (+), and many, many others.
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May @cstroeckw prove to be right: “Soon, people will look back in disbelief at what has happened to patients with #mecfs”.
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