I came across this Webinar that was given by the American Society of Hematology last year. It is an hour long and three doctors go through
the latest on developments in diagnosis and treatment of Antiphospholipid Syndrome (APS)/ HUGHES Syndrome. We all seem to read alot about APS but It is good to actually hear a doctor going into detail about APS.
Antiphospholipid Antibody Syndrome Webinar
from the American Society of Hematology with
•Dr. Mark Crowther (McMaster University) – Diagnosing Antiphospholipid Antibody Syndrome
•Dr. Tom Ortel (Duke University) – Anticoagulant (Blood thinner) Management of Antiphospholipid Antibody Syndrome
•Dr. Shannon Bates (McMaster University) – Management of Antiphospholipid Antibody Syndrome in Pregnancy
I'm afraid I haven't heard of these doctors in the US and am not aware of them being in the APS ACTION group, so presume they must be doing their own things somewhere else. It's good that the momentum is building and more information is being shared - funny to note though that they describe it as the AAS - yet another name for it - one day, hopefully it will settle. I was given to understand that in the US, it was agreed as APS so am used to the Japanese, Canadians and Europeans called aPL other terms but not the Americans. Just goes to show that the condition's name certainly has an energy of its own at the moment ..
Dr. Ortel is in charge of the study about if APS has a genetic link. I am planning on seeing him after they get my medical records. He seems to be one of the few in my area. This study is going on throughout the US in several different states. Duke & UNC Chapel Hill are conducting the study in NC. I was impressed with the email I received from him about the study & I talked to his assistant the next day. So they seem to be on top of things.
I was wondering if you self referred to see Dr. Ortel or if your PCP sent you? I am still looking for a good doctor to help things out with me. I live in Ohio and am still looking. I could see Dr. Erkan in New York but read alot about Dr. Ortel too.
I found the study & contacted them. I'm trying to find out if the elevation of antibodies I had that caused my miscarriages is APS. At the time, 20 years ago, I was told that it only caused miscarriages. After finding this website, I am having many of the same symptoms that many people on this website that have APS. I have filled out the paperwork for the study so they can look at my medical records to see what kind of tests showed the elevation of antibodies.
Hello, I live in New York State...monitored by Dr. Andrea
Gaito MD, Rheumatologist in Basking Ridge New Jersey,
about 45 min east of Manhattan NY.....she diagnosed me 2 years ago...I had been ill for years and my PCP didn't have a clue.....I RECOMMEND her A++++. luisa
Yes...Dr. Ortel has an excellent reputatio in the states.
This paragraph was taken from: The 13th International Congress on Antiphospholipid Antibodies - Patient Perspective
As patients, we have taken pride in educating ourselves. Most of us claim to have read almost every article written on the subject of APS and know the names of the authors well. As these physicians made their way to the registration table, we were able to finally put a face with an infamous name. From the poolside welcome dinner to scientific session, we were somewhat starstruck as we met great men and women such as Dr. Graham Hughes, Dr. Michael Lockshin, Dr. Thomas Ortel, Dr. Doruk Erkan, Dr. Thomas Greco, Dr. Robin Brey, Dr. Silvia Pierangeli, and so many more.
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Rynards dease
Confused
Hello APS family and friends
Professor Graham Hughes' Blog October 2017
Can you help take part in a clinical trial?
