Rather than the article review I have been promising, today's post will cover the local amyloidosis support group meeting Mom and I attended on June 7, 2014. Oddly enough, this was my first local support group meeting since June of last year, due to visitors during the November 2013 meeting and my traveling during the March 2014 meeting.
Attendance at this meeting totaled 29 people, including the two guest speakers. By my count there were 16 patients and 11 caregivers. Counting me and Mom there were seven familial patients, with two of those patients from a single kindred in which 17 family members have tested positive for the mutation. There were also five patients with localized or suspected localized amyloidosis. That leaves four patients with AL amyloidosis (plus a caregiver for someone who was not there). So there were more familial than AL patients at this meeting, which is a first for me. Go Familial!!
One of the AL patients was only 34 years old, but doing much better than he was at the November 2012 meeting when he was in a wheelchair. He is walking fine now, and it was good to hear him and his wife discuss the activities he can now do post-recovery. One of those activities is apparently making babies, since they have a child under the age of one now.
One of the guest speakers was from Prothena, and he discussed the NEOD001 trial which is for patients with AL or AA amyloidosis. I did not take any notes during that presentation since it does not apply to fibrinogen amyloidosis, but it was interesting to hear him describe what the drug is actually doing at the molecular level.
The other guest was Dr. S from Mayo Clinic in Jacksonville. He did not give a prepared presentation, but his format at these meetings is to have the patients voluntarily present their cases to him and ask questions, and then he uses the specifics of each case to give short presentations or lessons on the various types of amyloidosis, treatments, methods of diagnosis, etc. Since part of these meetings is usually reserved to go around the room and have everyone present their case to the group, I thought this was a good way to incorporate some of that into the doctor's presentation while he had the floor.
So that's about it for this post, other than the monthly blog stats at the end. Next up, some time in July, will be the next article review.
=====Monthly Blog Status Update=====
As of May 31, 2014:
Total posts: 138 (2 in May)
Total pageviews: 16,000 (~1500 in May)
Email subscribers: 10 (no change)
Total number of countries that have viewed the blog: 94
4 new countries viewed the blog in May: