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 Rare Disease Day 2018

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medmisfit
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PostSubject: Rare Disease Day 2018   Fri Feb 23, 2018 4:15 pm

First, let me apologize because this picture ended up being HUGE! lol. I uploaded it to bring your attention to the Show Your Rare social media campaign, but unable to edit it. They're asking rare disease patients and supporters to paint their faces and post it on social media to show support and raise awareness. I chose a zebra theme because the rare community uses zebras to remind the medical community that zebras do exist (they're taught "if you hear hoofbeats, think horses not zebras"), but I've seen warrior paint, support ribbons, hearts, and all kinds of things. I did it in 20 minutes on a not so great day and the face paint was under $20. I've also had painting parties, where other adults took the lead and got children involved..it's at least fun to watch! If interested, you can get specifics here https://www.rarediseaseday.org/article/show-your-rare.

If that's not your thing, there are many ways to get involved (some as easy as clicking your mouse). I encourage you to check out these sites..The world-wide campaign is supported by Eurodis, so visit https://www.rarediseaseday.org/. In the US it's supported by NORD, and you can find their information here http://rarediseaseday.us/. And, Global Genes is one of my favorite support networks, especially for children..here is their page for rare disease day https://globalgenes.org/wrdd2018/.

This is our opportunity to come together as a community and raise awareness for rare diseases, so I hope you'll take advantage! Alone we are rare, but together we are strong.
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Sophiasmom
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PostSubject: Re: Rare Disease Day 2018   Sat Feb 24, 2018 4:33 pm

Hey that's a great pic!
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medmisfit
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PostSubject: Re: Rare Disease Day 2018   Sat Feb 24, 2018 9:51 pm

Thanks Deb! I’m on my phone and it’s flipped sideways now. Oh well, you get the gist..lol. Would your son allow a little bug or something on his cheek? It really is fun to do with the kids, if their conditions allow it.
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PostSubject: Re: Rare Disease Day 2018   Mon Feb 26, 2018 7:22 am

we could paint a panda bear on his face!  he has PANDAS now too.  I think there has to be a relationship to the IIH but his IIH symptoms haven't really changed with the IVIG.  I mean, what is the likelihood he would have both??  AND MCS??  the thing is that we don't go on social media.  I just see so much negativity come out of that.   one thing that really horrifies me about the world today is how mean people are online when they can't see the people they are bullying.  just nastiness.  I miss the 1970s.

it's interesting, there is an article on Medscape today about lawsuits over doctors missing Zebras.  I had plenty of comments to make about it!  there are other docs on there commenting their frustration with their own Zebra diagnoses being missed.  docs just focus on horses and ignore the rest.  big problem being they tell patients they have anxiety and ignore underlying medical reasons for it.  I would include the link to it but you need a login for Medscape to see anything on it.
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PostSubject: Re: Rare Disease Day 2018   Thu Mar 01, 2018 12:57 pm

Aw, that would be so cute! I understand your concerns about social media. I honestly just started Facebook a year or two ago for fundraising and keep my circle very small. I have some friends that even use fake profiles in order to avoid everyone. It’s an easy way to keep in touch with people outside of my zip code, since I don’t really travel. I’ve also enjoyed following some groups.. The Mighty, for instance. It’s people from rare disease community that submit articles on their experiences and just amazing to see how much we do really have in common. I also follow NASA because they’re doing work on intracranial pressure. I threaten to close my account all the time because too many people have found me, but benefits outweigh the negative for me right now.

I’m sorry to hear your son keeps adding more diagnoses! I do think it’s interesting that people with rare diseases end up with multiple and agree that there has to be a causal effect or symbiotic relationship of some sort. I can see clear connections with mine, but others don’t seem to make any sense. I have also come across people that had parents in Vietnam that receive benefits due to their exposure to Agent Orange and wonder how much our environment has played into all of this. I’m sure you and I could talk about it forever..I just wish we were independently wealthy, so we could figure it out! lol

And, I’m glad the medical community is finally being held accountable for missing zebras. I was told that I was just depresseed for years before I found someone that heard me and started running tests. Obviously you would look at common causes first, but there has to be a better system.Again, if only we were wealthy!
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PostSubject: Re: Rare Disease Day 2018   Fri Mar 02, 2018 5:33 am

oh yeah, if I only had a hundred dollars for every doctor who told me I was just depressed.  woohoo would I be rolling in it!
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