Not all meetings have had minutes submitted. Here are a few. APRIL 8, 2008 MEETING:
Thank you to all who attended the support group meeting on April 8, 2008 and to our distinguished guest speaker, Terry Clyburn MD. Dr. Clyburn is a board certified orthopedic surgeon in Houston.
Attendees were greeted by co-leader Steve Haskew.
Shervin Assassi MD, faculty member of the Division of Rheumatology at the University of Texas Health Science Center, spoke briefly about research being done to find the frequency of associated conditions in the family members of persons diagnosed with AS. He is seeking volunteer family members, parents, siblings or offspring of AS patients, to attend one study visit to complete a questionnaire, give a blood sample for DNA testing and have joint measurements taken. The purpose of the study is to see how often iritis, psoriasis, reiters syndrome, colitis and crohn's disease found in the families where one or more people have AS. Dr. Assassi then provided the introduction for Dr. Clyburn
Dr. Clyburn’s slide presentation provided a wealth of information regarding surgical techniques often used in AS patients. He first described spinal and hip problems associated with the disease and illustrated his discussion with x-ray photos of actual patients with hip disease and fused spines. He stated that 20-40% of AS patients have hip involvement and half of those may need hip replacement at sometime in their lives
Different types of hip replacement hardware are available and the choices have improved over the years. Dr. Clyburn prefers all metal replacement hardware for his patients because of their durability. Hip replacements may last up to 20 years depending upon how active the patient is. His stated that posterior placement of the apparatus was a preferred methodology with fewest post surgical side effects. He also stated that a recovery time for hip replacement could be 3 months, including follow up physical therapy.
Dr. Clyburn also discussed a little used technique for dealing with severe curvature of the spine caused by fusion. Some AS patients fuse in such a way that they are bent far forward thus impeding their ability to swallow and breath properly. In these cases a surgical procedure to remove parts of vertebrae and realign them to restore a more upright posture might be a consideration. Dr. Clyburn emphasized that this is a highly dangerous procedure due to the fact that the spine encases the spinal cord and nerves. Only a few surgeons in the Houston area perform this surgery and only when a person’s health is severely handicapped by the spinal curvature.
Dr. Clyburn spent 15 minutes at the end of his presentation answering questions. Several persons in attendance were patients of Dr. Clyburn, having had hip replacement surgery previously under his care.
Those in attendance stayed for 30 minutes after the talk to enjoy drinks and snacks and to share some social time. We all welcomed the Chu family as they attended their first meeting. It was great to see Joey DeClouette again with his mother Gwendolyn. Joey was one of the people who attended the first meeting of the support group 4 and ½ years ago.
Thank you so much to Dr. Clyburn for taking time out of his very busy schedule to speak with our attendees. We are so appreciative to the medical community for their support of this group.
The next support group meeting will be held on June 10th at 7 pm in the 5th floor gallery of the UT medical school.
DECEMBER 2007 MEETING:
Hello All & Merry Christmas to everyone!
The Meeting/Dinner was great. We would like to thank everyone who attended and for their contributions/participation.
Dr. Reveille was there. After we had our meal and visited a bit, he filled us in on some of the latest in Genetic Research Developments and explained them (as only he can) at a layperson's comprehension level.
In essence the are two new genes. The new genes have been identified as ARTS1* and IL-23R*. these two links are for your use to find out more:
http://www.spondylitis.org/spondyplus.aspx.
http://publicaffairs.uth.tmc.edu/media/newsreleases/nr2007/DisablingArthritis.htm
Dr. Reveille expounded on the monumental significance of this finding and on how the Drug companies and research groups will be able to target better treatments and meds and as they begin to better understand how these genes function in disease onset and progression the hope is of course to be able to develop better tools for earlier diagnosis. This gives us new hope and what a great way to begin the Christmas season. The good Doctor did in fact elude to another finding that he was not yet at liberty to discuss so we will have to come back for more!
Latest AS Houston Support group news is we are currently looking to having a core group get together for a brainstorming meeting soon to discuss the possibilities of growing and expanding the activities of the Group. This core group would also see about inquiring amongst our members to see if there would be interest for a few weekend/Saturday meeting dates throughout the year. Anyone who wants to be a part of this steering committee can come join in. Give Steve or myself a shout.
We welcome your input
Best Regards
Richard Powell
December 17, 2007
APRIL 2007 MEETING:
For those of you who were able to make the meeting. Thank you for coming out and thanks a to Jim Rose for the video. The video was an interview-style biography presentation of famous Phoenix Arizona artist Phillip C. Curtis. It was very interesting to say the least. He had AS! As a very young man he lived in a colder region than Phoenix and was involved in some sort of frozen lake winter calamity - he fell in the cold water. The dorctors knew he had AS and a common treatment of that time period saw fit to keep him lying flat of his back for a year and he was totally fused intentionally. Mrs. Laura and Dr Reveille say that once the spine is fused the pain is less prominent.
Mr. Curtis's art work has a style that is unusual and unique as well. Every person drawn either stands or sits very erect, much like Mr. Curtis looks. Even in pictures with multiple people, they all were presented that way and there was no interaction portrayed amongst the subjects - very unique. He went through a period where Pablo Picasso and perhaps Salvador Dali influenced his work, and he was quite a candid character in the interviews.
Though the video ran a little long, it gave us all a chance to think about how he was able to work around and through his pain and discomfort to lead a very successful life.
The rest of the meeting was some sharing our stories and catching up on current events, Paul Sobieski shared that he became a part of a clinical trial and had minimal success w/injectable TNF blockers so he tried a Gluten free diet and appears to have done well. Mrs. Laura cautioned that we should always consult with your physician before changing our diet. Mrs. Laura also shared a bit about one of Dr. Reveille's renowned research colleagues (Dr. Robert Inman of Toronto) and that some of his latest research is on investigating a possible link to klebsiella/AS.
We had refreshments in the way of fresh fruit, cheese and crackers, and a veggie tray. with some desert muffins & drinks from Laura Diekman. John Hayes addressed the group on response to the Survey that he developed to improve the quality of our meetings that he has emailed around to the members and that he had received nine responses and he encouraged those who had not replied to take part.
I seconded the motion as I have enjoyed working with John in fine tuning the survey before it was sent out. It looks promising with more to follow soon. Please take the time to fill it out. It will only make us better at serving each other and help us to improve our outlook on dealing with the rigors of living with AS.
It even has a section about extra activities like a day in the park, a cookout, or a ballgame or museum trip. We could even go to tha beach!!!!
Speaking of walks, Laura French informed us of the up coming Arthritis foundation walk on May 5th. Paul Sobieski told us he was a point of contact Volunteer. Here's a link: http://houstonarthritiswalk.kintera.org
Hope to see you all at the June meeting. The agenda is still open. Don't forget the survey :-) :-) :-)
Respectfully submitted with Warm Regards,
Richard Powell
April 25, 2007
|