ANA and Antibody Testing in Systemic Sclerosis: A Guide for Patients
On Saturday, May 15th, I did a presentation and follow-up Q&A session to a joint meeting of several Scleroderma Foundation chapters on a very important, but complex topic – ANA and antibody testing in systemic sclerosis. While much of this information is on the Scleroderma Education Project website, this presentation contains updated and additional information that we have not published before. (The information on the website will be updated this summer.) I was very fortunate [...]
ANA Titer and Antibody Quick Survey
Quick Survey – ANA Titers in SSc Patients While this is not widely known, some antibodies that are specific to the systemic sclerosis family of diseases tend to have high ANA titers and others much lower ANA titers. Note that there are certainly many exceptions. We are conducting a quick (five question), anonymous survey to see if there is any clear tendency for some antibodies to be associated with higher or lower antibody levels. I [...]
Pulsed Plasma Exchange: A Conversation With Eight Pioneers
Last week, we had a Zoom call that included eight of the nine people who are now individually trying an experimental treatment called pulsed plasma exchange (PPE) to treat their systemic sclerosis (SSc). Seven of the patients are in the US and one was in Moscow. The missing person lives in Turkey. The call was very interesting so I thought I would summarize some of the key points that came up during the two hour [...]
Happy Holidays! Help Amazon Donate to the Scleroderma Education Project
Several years ago, Amazon set up a program to help registered (501c3) non-profit organizations. The program is called Amazon Smile. After you select a non-profit organization, for every dollar you spend on Amazon, Amazon matches this with a 0.5 cent donation to your designated non-profit organization. It is as simple as that. It costs you nothing, but those 0.5% donations can really add up over time. Here is how to set up and use Amazon [...]