Sunday, December 31, 2017

Charlotte Support Group Meeting: November 18, 2017

End-of-year greetings, loyal blog readers. In this post I have some exciting news in the world of fibrinogen amyloidosis, followed by a report of a local support group meeting, some interesting data I recently gathered, and finally the oh-so-exciting monthly blog stats.

First, the exciting news. In November, shortly after I returned from the hereditary amyloidosis support group meeting in Chicago, I learned that another liver-only transplant for fibrinogen amyloidosis occurred in March of 2017 at Mayo Clinic. As far as I know, this is only the second liver-only transplant ever for fibrinogen amyloidosis, with the first one occurring in 2010. The most recent transplant recipient is a female in her early 50s who initially presented with proteinuria in August of 2015. She is currently doing very well post-transplant. The outcome of this case will be very important to patients in a similar position in the future, since this transplant occurred relatively early in the progression of the disease. I may have some more to say about this particular case in the near future as part of a larger discussion about organ transplants for fibrinogen amyloidosis.

On Saturday, November 18 I attended the amyloidosis support group meeting in Charlotte, North Carolina. But David, don't you go to the Dallas support group meetings? Well, not any more since we moved to North Carolina this summer. The closest support group meeting to me now is in Charlotte, and currently those are held once per year. At this meeting there were two local doctors from Levine Cancer Institute, and Dr. Eli Muchtar from Mayo Clinic in Rochester. I think there were around 45 people in attendance at this meeting, and almost all patients had AL or ATTR. I think there were one or two patients with localized amyloidosis (including the facilitator), and I was the only one with a rare hereditary type.

Now, the interesting data I recently gathered has to do with the number of other people I have been in contact with who also have fibrinogen amyloidosis. I first became aware of fibrinogen amyloidosis when my mother was diagnosed in 2010, and I started this blog in 2012, so I've been in contact with many patients with AFib through the blog and various other web sites over the past seven years. But I did not realize how many until I started going through some old emails and consolidating that information. I will use the term "kindred" here instead of "family." (People in the same kindred are biologically related, whereas people in the same family can be related biologically or by other means such as marriage or adoption.) Not counting my own kindred, I have been in contact with people from 12 other kindreds in which at least one person has been diagnosed with fibrinogen amyloidosis. I believe seven of these kindreds are based primarily in the US and the other five are based primarily in the UK.

There is another large kindred in the UK (Scotland) I have not been in contact with but am somewhat familiar with because their story has been told in at least three separate articles on the internet (see below). You won't see the word "fibrinogen" in any of those articles, but some excellent detective work by somebody (not me) did uncover the fact that fibrinogen amyloidosis is the type this family has.

On a separate note, I received an email this week announcing that the 2019 Hereditary Amyloidosis Support Group Meeting will be October 25, 26 and 27 in Chicago. So mark your calendars. (If you have a 2019 calendar.)

That's it for 2017. I'll see you all next year.

=====Monthly Blog Status Update=====

As of November 30, 2017:

Total posts: 180 (3 in November)

Total pageviews: 75,100 (~1300 in November)

Email subscribers: 15 (unchanged)

Total number of countries that have viewed the blog: 145

One new country viewed the blog in November:


No comments:

Post a Comment