Wednesday, February 20, 2013

Moving forward

Now that the blog is caught up to the present day we can expect the frequency of posts to slow down a bit. Unless and until something happens regarding a kidney transplant for Mom, we'll mostly be covering the dialysis process and the almost weekly drama that seems to occur with that. Although it's tempting, I won't rename the blog "The Dialysis Diaries" since the primary focus is still on fibrinogen amyloidosis. So I'll also be writing about any family news in that area, clinical trial updates, and updates on any other patients (with permission) who want to "go public," so to speak.

One thing I plan on doing in the blog is reviewing the relevant medical journal articles I have access to, which are listed on the Resources page. I'll start with the oldest article and work my way forward. I also have some other standalone pages in the works, similar to the existing Resources and Patient Timelines pages.

Another tidbit of information I'll toss out periodically about the blog is what search terms people have used to find it. Search terms that include words such as "fibrinogen" or "amyloidosis" occur frequently, as expected. Another one that turns up frequently is "CPHPC" since I have a handful of posts dealing with that. However, a recent search term I did not expect to see was "bra and permacath." I'm sure the post covering October 26, 2012 was the match for that search term, and I would guess the person searching for "bra and permacath" was a female who recently had a permacath inserted in her chest and was looking for tips on how to wear a bra with it. Unfortunately, instead of finding some helpful hints, she read a story about someone almost bleeding to death in a dialysis chair. I'm sure that didn't help her anxiety level regarding being on dialysis. Sorry about that, whoever you are.

A new web site that may drive some traffic this way is, which is a partnership of EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders) in the US. The stated purpose of this web site is "to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources." In January of this year a note was sent to the Yahoo online support group saying they were looking for stories of different types of amyloidosis for an international web site. I wrote to the contact person and offered to write up something on fibrinogen amyloidosis. What I submitted has now been published on that site, and the direct link to my story about fibrinogen amyloidosis is:

So stay tuned as our story unfolds at a little slower pace than it has so far, and we learn a little more about the history of fibrinogen amyloidosis (and its diagnosis and treatment) along the way. If you aren't already subscribed by email, it's easy to do on the right side of the page. Once you're subscribed you don't have to check the blog periodically for updates, since they will automatically be sent to you via email.

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