Welcome New Visitors!

If you are reading this page for the first time, there is a good chance you found this blog while searching for information on fibrinogen amyloidosis. (Although I do get a lot of visitors searching for info on CPHPC.) If you have fibrinogen amyloidosis or know somebody who does, I hope you find this blog helpful. This is what you will find here:

1. The story of my family's journey with fibrinogen amyloidosis. Our story starts in 2010 with the first blog post here.

2. A page titled "What should I do now?" listed on the right side. This page contains my recommendations on what to do if you or someone in your family has fibrinogen amyloidosis.

3. A page titled "Fibrinogen Amyloidosis Resources" (listed on the right side) that has three main sections:

  • A list of journal articles related to fibrinogen amyloidosis and where you can find many of them online. I have indicated which articles I have reviewed in the blog.
  • A list of internet resources (other than journal articles) related to fibrinogen amyloidosis.
  • A short list of some of the main internet resources related to amyloidosis in general.

4. A page titled Simple Glossary (listed on the right side) that has my simple explanations for much of the medical terminology used in the journal articles and in the blog.

5. A page titled "Fibrinogen Amyloidosis Patient Timelines" (listed on the right side) that documents the major milestones of each person's journey with fibrinogen amyloidosis. Hopefully this page can be of benefit to those who would like to see some examples of the progression of this disease. If you would like to add some of your own medical history to that page, let me know.

Note: You will find almost nothing here about the most common type of amyloidosis (AL amyloidosis) or other familial types such as ATTR.

If you or someone in your family has fibrinogen amyloidosis I would love to hear from you. (You can comment here or email me at toe at juno dot com) As of November of 2015 I been in communication with only seven other families with fibrinogen amyloidosis.

David Jennings
Plano, Texas, USA
[Page last updated December 16, 2015]

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