Wednesday, February 5, 2014

XLH and social media

We're kicking off the redesigned blog with a series of posts on the role of social media – blogs, Twitter, social gathering sites (like Facebook, Google+ and forums), and whatever comes next – in the XLH experience.

Today, the topic is using social media in the context of having a medical diagnosis, either for yourself, or for a family member. For some of us, having information at our fingertips can help reduce the anxiety and stress. Even when we can't change a situation, just knowing the facts can make it feel less overwhelming. Sometimes we can even find coping tools in other patients'/families' experiences, which we would never have thought of ourselves.

Of course, when gathering information from the internet, whether from a website or a blog, it's important to make sure that the information is coming from a reliable source. At the top of my personal reliability scale is the National Institutes of Health, which incorporates a blog into this page.

Somewhat more specific to XLH patients, although it encompasses other conditions too, is the American Society for Bone and Mineral Research. It too has a blog incorporated into its home page, which you can find here.

To get the most from social media, look beyond XLH-specific (or endocrine-specific or bone-metabolism-specific) resources to sites that address symptoms common to many conditions. For example, the Global Genes Project, which is a "rare and genetic disease patient advocacy organization" has a blog that features a variety of rare conditions. Check it out to see why you should be wearing jeans on Friday, February 28. You'll also read about other patients and families dealing with some of the same frustrations that we have in the XLH community. If you're interested in the politics of rare disease research funding, check out the blog of the Rare Disease Legislative Advocates.

I always find interesting information in the health section of my local (Boston) public radio station, where its blog is known as Commonhealth. It's a good source for new and timely issues in health care, and, located as it is in the midst of several world-renown medical centers, they have access to a wealth of contributing experts.

Perhaps those resources are all too technical and scientific for you. I admit that biology and chemistry weren't my best subjects in school, so sometimes I prefer a more casual, laid-back resource like personal blogs. They shouldn't provide medical advice, but they can help you put your own experience into perspective.

Network member S.G. Hunter has maintained an XLH-focused blog for the past two years. I'm not aware of any other blogs that are dedicated to XLH, but if you know of any, please drop me (shortleggedlife at a note about them.

There are plenty of blogs on just about any symptom you can imagine. Just as an example, you probably know that anyone with chronic illness is at risk for depression, and it can be helpful to not feel alone with the darkness. Internet blogging sensation, Allie Brosh, is an extraordinary storyteller and graphic artist, who somehow finds an uplifting message in the midst of depression.

Finally, if you visit any of the suggested blogs without finding anything that appeals to you, don't give up. Connecting with blogs is a bit like going on a blind date or reading a book that a friend recommended. Sometimes you're left wondering what on earth the friend was thinking. But when the connection is right, it can be life-changing. If you find that kind of great blog, please share it with me (shortleggedlife at, so I can pass it along to the rest of our readers.

Meanwhile, I hope you'll check back here regularly to see what's new, or else subscribe to the posts in email format. Next week, XLH member S.G. Hunter will share some thoughts about the blog she's maintained for the past two years, and the following week, Jennifer West will talk about how she turned to social media when her daughter was diagnosed with a spontaneous case of XLH.

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