I am so glad to meet you! As always when I learn about a disease I have to read on it. That's what I just did on EDS. We have many things in common, besides the fact that we are mental health nuses, i am also living with a disease that changed me, fibromyalgia. I know it's much less disabling than EDS because I still can work, but I also need many periods of rest in a day. I have to endure the pain that has become my second nature.
I,too have been following @cryptopie for a while now and my instincts at first told me to believe him so I did. Then came the story of @steemitph and @dandelion that confirmed I did right. Now, to see someone helping him the way you do is inspiring.
I am very glad to meet you and will gladly be following your blog :)
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Many people with EDS are diagnosed fibro wrongly. Among other things. It is not as rare as doctors say. Just misunderstood, underdiagnosed and mismanaged.
I have a motivated mind, but my body has given up at the moment at least.
I am hoping to generate more belief and support for Arnold. Because I need more people contacting organisations outside of this platform.
He needs appropriate care and he needs it funded.
I get easily tired, we need a constructive collaborative approach.
Team Philippines are amazing, but they need people outside of the Philippines to help them lobby for his treatment. Say hi on there discord charity chat. A few nurses there are doing amazing things.
You've inspired me to make a post on Fibromyalgia :)
https://steemit.com/health/@jamisa/a-little-bit-about-me-and-my-fibromyalgia
That's great I'll go have a look :)