tag:blogger.com,1999:blog-3928882285652463288.post123496130866221795..comments2016-04-17T14:06:00.805-07:00Comments on Our Unshakable Faith: World Rare Disease Day 2016Anonymoushttp://www.blogger.com/profile/07369986097948672826noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-3928882285652463288.post-13641802757553980042016-02-03T23:26:18.568-08:002016-02-03T23:26:18.568-08:00I love how open you are about everything on your b...I love how open you are about everything on your blog. I think it's great that you take the time to share your experience with things like rare diseases. I'm sure you're touching lives every time you share a story. :)<br /><br />And I agree - she should definitely decide in the future. It's great to let kids take ownership of things for themselves. Pamelahttps://www.blogger.com/profile/02842865750870571364noreply@blogger.comtag:blogger.com,1999:blog-3928882285652463288.post-82550221750409363562016-01-31T16:08:39.055-08:002016-01-31T16:08:39.055-08:00Depending upon how many people you know, you proba...Depending upon how many people you know, you probably DO know someone who's got a rare disease, a rare form of cancer, or something along those lines. There's over 7,000 "rare" diseases. 30 MILLION people in the US have one. So it's likely you know someone, they just chose not to make it known. Everyone is fighting some battle, most of the time we just don't know it. <br /><br />There was a graphic Global Genes posted last year I think that there's one person in every elevator who has a rare disease on average. 1 in 10. 10% of the US population. It's pretty mind blowing when you think about it like that.Anonymoushttps://www.blogger.com/profile/07369986097948672826noreply@blogger.comtag:blogger.com,1999:blog-3928882285652463288.post-87272713441613556612016-01-31T16:05:09.964-08:002016-01-31T16:05:09.964-08:00You are so correct about advocating! So many peopl...You are so correct about advocating! So many people "don't look sick" but battle invisible illness. That's why I love when people post their "bad days," "hospital stays," etc. Because it lets the world know that I may look normal, but my life is anything but normal, except to me.Anonymoushttps://www.blogger.com/profile/07369986097948672826noreply@blogger.comtag:blogger.com,1999:blog-3928882285652463288.post-90780990228152050982016-01-31T13:21:23.164-08:002016-01-31T13:21:23.164-08:00Thank you for sharing this! I don't personally...Thank you for sharing this! I don't personally know anyone with an invisible rare disease (well, not that I'm aware of anyway!), but I like to learn up about these things, because you never know who you're going to meet...and some people might not feel as comfortable talking about it.Natalie Pataliehttps://www.blogger.com/profile/03499108834853503737noreply@blogger.comtag:blogger.com,1999:blog-3928882285652463288.post-84794323738311403622016-01-31T08:31:17.010-08:002016-01-31T08:31:17.010-08:00I don't have a rare disease, but I do have Cro...I don't have a rare disease, but I do have Crohn's Disease, which affects roughly 565,000 Americans. I was diagnosed at 8. I think it was easier for me to be diagnosed as a child than as a teenager, which is more common. Children are less likely to feel shame. I was too naive to feel shame or embarrassment over an Irritable Bowel Disease! <br /><br />I have always been very open about it. I even blog about it, sometimes describing my symptoms in graphic detail. Since it's an invisible illness, I "don't look sick." It's important to me to advocate for all people with an invisible illness by using my own story to challenge assumptions about what it looks like to be fully able-bodied. Brita Longhttps://www.blogger.com/profile/17576168097570744357noreply@blogger.com