Friday, September 27, 2019

Where has the year gone?

Greetings, loyal Fibrinogen Amyloidosis blog readers. I am still here, and I have all kinds of excuses for putting the blog on the back burner since January. They aren't great excuses and most of the major events are over, so we'll see if I can pick up the pace a little going forward. There have been a few recent journal articles related to fibrinogen amyloidosis that I need to review, so hopefully I can get one or two of those done by the end of the year.

First I should mention that the 2019 Biennial Hereditary Amyloidosis support meeting is less than a month away. It takes place at the O'Hare Hilton in Chicago and starts with a meet and greet the evening of Friday, October 25. More information can be found at this link:  If you plan on coming to the meeting, please send me an email (toe at juno dot com) so we can get together at some point. This will be my fifth such meeting to attend, and you can read my blog posts about previous meetings here, here, here and here.

I have updated the What should I do now? page of the blog for the first time since 2013. Other than some minor edits here and there, I did expand on the sections where organ transplants are mentioned. That topic is probably worthy of one or more blog posts.

A new online amyloidosis community has recently been created as a resource for people diagnosed with amyloidosis and those in the process of being diagnosed. The web site is It has not only a chat feature (called a Social Wall) for people to have discussions (similar to Facebook groups but with many additional features), it also has an ever-growing list of trusted resources that have been approved by medical professionals, plus a section called Diagnosis Educator with information regarding symptoms, medical tests used in diagnosis, and treatment options. This site is still rather new and there is not a lot of activity yet, and although most of the content will be related to AL or ATTR amyloidosis, I would still encourage everyone to take a look at it and join if you feel so inclined. If you explore the community a little you may even find a picture of me and a short bio, as I have some involvement with the ongoing development of the site.

Speaking of the amyloidosis community, our little fibrinogen amyloidosis community continues to grow outside of the US and Europe. Earlier this year I became aware of a large kindred in New Zealand with several family members diagnosed with fibrinogen amyloidosis, and another kindred in Brazil.

In organ transplant news I don't have any news, other than the fact that all the recent transplant recipients I am aware of are doing well, including the third liver-only recipient who received a liver transplant in December of 2018.

In personal health news, I had a physical exam in September and I am still asymptomatic, with normal creatinine and GFR, and no signs of proteinuria.

That's all for now. I will definitely be blogging about the Chicago meeting, so you won't have to wait another . . . (counting) . . . 8 months for the next post.

=====Monthly Blog Status Update (consolidated) for January through August, 2019=====

As of August 31, 2019:

Total posts: 186 (1 in January)

Total pageviews: 130K (~2400 per month, which includes 4500 hits from Israel in one day, and 2000 hits from Israel on another day)

Email subscribers: 16 (increased by 1 in January)

Total number of countries that have viewed the blog: 156

6 new countries viewed the blog from January through August:

St. Lucia
Cayman Islands
North Macedonia
Antigua and Barbuda