tag:blogger.com,1999:blog-25073771.post8699356542262013154..comments2023-11-05T04:05:03.588-08:00Comments on A Chronic Dose | A blog about chronic illness, healthcare, and writing.: IRL: The Rare Disease EditionLauriehttp://www.blogger.com/profile/10392908564921877962noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-25073771.post-39747408328531777942011-04-07T12:28:53.593-07:002011-04-07T12:28:53.593-07:00Great post Laurie. I often think we forget about ...Great post Laurie. I often think we forget about the lack of community support for those with rare illnesses, but like you said the challenges are universal.Peter Waitehttps://www.blogger.com/profile/03040332160106483865noreply@blogger.comtag:blogger.com,1999:blog-25073771.post-32341034092128282572011-03-30T09:17:41.643-07:002011-03-30T09:17:41.643-07:00Thanks so much for stopping by, Grace! A loved one...Thanks so much for stopping by, Grace! A loved one recently suffered very similar issues and having watched her struggle to assimilate her symptoms and manifestations of it, I can only imagine how isolating brain injury can be...particularly, I would think, given how young you are for this type of event.Lauriehttps://www.blogger.com/profile/10392908564921877962noreply@blogger.comtag:blogger.com,1999:blog-25073771.post-11636377452340035312011-03-29T17:54:01.566-07:002011-03-29T17:54:01.566-07:00I discovered your blog, and this post hit home. I&...I discovered your blog, and this post hit home. I'm a 47-year-old mom with 2 young kids, and a year ago I had a stroke. Although stroke is unfortunately too common, some of the disabilities that result--movement impairments, speech and cognitive issues--can be very isolating. Thank you.<br /><br />http://myhappystroke.blogspot.com/Grace Carpenterhttps://www.blogger.com/profile/01728427612743156573noreply@blogger.comtag:blogger.com,1999:blog-25073771.post-567698108489371212011-03-26T05:45:55.418-07:002011-03-26T05:45:55.418-07:00Hi Lynn,
Thanks for stopping in! Yes, we are luck...Hi Lynn,<br /><br />Thanks for stopping in! Yes, we are lucky there is such an active, involved community! I have learned so much from other people with PCD. <br /><br />It was a different experience altogether to meet someone face to face, as I'm sure you can relate to...nice when the names on the screen have a face!<br /><br />(And sure, would love a wristband :)Lauriehttps://www.blogger.com/profile/10392908564921877962noreply@blogger.comtag:blogger.com,1999:blog-25073771.post-37676953932708239012011-03-25T19:16:30.510-07:002011-03-25T19:16:30.510-07:00Thankful that at least for PCD we do have a great ...Thankful that at least for PCD we do have a great community! There are so many of us out here. I'll have to send you one our trendy wristbands:-) Hope to meet you at one of the annual PCD Family education days.Lynnnoreply@blogger.comtag:blogger.com,1999:blog-25073771.post-49750746293743291622011-03-25T09:13:04.738-07:002011-03-25T09:13:04.738-07:00Thanks, Rachel! (And that reminds me, I need to ch...Thanks, Rachel! (And that reminds me, I need to check in with that forum!)<br /><br />I totally, totally agree with you and can imagine that patients with mental health problems feel as isolated as rare disease patients do...perhaps even more because, as you say, the symptoms themselves can really influence the ability to connect to whatever support may exist.Lauriehttps://www.blogger.com/profile/10392908564921877962noreply@blogger.comtag:blogger.com,1999:blog-25073771.post-62455209871104190932011-03-25T09:01:09.534-07:002011-03-25T09:01:09.534-07:00Monumental, indeed! Glad you were able to have tha...Monumental, indeed! Glad you were able to have that in-person experience, as I know it makes all the difference. I am becoming more aware of how GREAT the diabetes online community is, but how LONELY it must feel to be part of a disease group with so few members. (So I hope that the ChronicBabe forum group on rare diseases can grow, though.)<br /><br />While not as "rare", I do find mental health issues much more isolating than diabetes. No meetup groups, only online connections, etc - part of that has to do with the nature of the illness, though, too. We may all be experiencing too much anxiety and/or depression to get out there and support each other in person.Rachelhttp://talesofrachel.comnoreply@blogger.com