Dear Friend,

I hope this email finds you well and safe.

Dr. Robert Katz will present our next COVID-19 and the Lupus Community Web Meeting on Thursday, April 30, 2020.  Register for this event here and email your question for Dr. Katz to mary@lupusil.org.

We rescheduled the Social Security: Change & Confusion webinar featuring attorney Jeff Rabin to July 16, 2020.  You can register here.  

Mr. Rabin will make himself and his presentation available to anyone who can't wait until July 16th.  You can contact him at Jeff@rkblegal.com or call him at 847-652-9114.  If Jeff isn't available you can speak to Susan or Kelli. 

LSI is forwarding our petition to prioritize HCQ for lupus patients first to Governor Pritzker today.  We will keep you posted about our success.  We are leaving the petition up for additional signatures (here). The HCQ issue and our petition was featured on NBC Channel 5 News at 6pm on Wednesday, April 22nd.  You can see the story here.

We know that many of you are still struggling to get HCQ/Plaquenil.  Please email me your stories so we can share those with Governor Pritzker.

The stay at home order is extended through May - which means that we will celebrate Lupus Awareness Month from home. 

Lupus Awareness Month is typically the start of Illinois Lupus Walk season.  We have already postponed the Southern Suburbs Lupus walk from May 2, 2020.  Our Western Suburbs and Chicago Walks have not been postponed and we are looking into new ways to gather the lupus community and bring our lupus voices together in a safe way.  Stay tuned for more information and send your suggestions to info@lupusil.org.

If you have any information that may be helpful to others in the lupus community, please send it to me at mary@lupusil.org.  

Please contact us with your questions and concerns.  We are here to give you reliable, timely information.

Together we'll get through this.  Together we make a difference.

Mary Dollear, President, Lupus Society of Illinois 

COVID-19 & Lupus Community Web Meeting presented by Dr. Meenakshi Jolly

Thanks to Dr. Jolly and everyone who participated in last night's webinar.  The event was recorded and can be viewed here.

COVID-19 & Lupus Web Meeting with Dr. Rosalind Ramsey Goldman

Handout: Wellness
Handout: Exercise

Updates & Additional Questions since the Web Meeting on 4/2/20

Updated information is the change in CDC recommendations to use a mask.  There was more talk about just talking as a way that the virus might spread.

Still the most important things to do are:

• Social (physical distancing)-6 feet rule;
• frequent hand washing;
• also wash high touch areas;
• stay home as much as possible
• Face masks prevent you from spreading the virus especially early on when you might be asymptomatic, but face masks do not prevent you from getting it so please do the important health care measures

Please take care of yourselves: refer to the wellness links provided earlier

This is hard to do, but necessary to take care of ourselves

RRG

Questions:

Q: What are some immediate things we can do or add to our diet to give our immune system an extra boost?  (i.e. foods to eat, vitamins to take, fruits to eat.)

A: I am not aware of an immune boosting diet for lupus.  However, we recommend a well balanced diet with fruits and vegetables, whole grains, lean protein, and if you don’t eat dairy or green vegetables and avoid the sun you may want to take a vitamin D supplement.  Avoid processed foods and limit consumption of sugar sweetened beverages and desserts.  I know there are “immune boosting” diets online or recommended by some practitioners.   I think if the recommendations are similar to what I stated at the beginning of this paragraph.

Q: Would plasma from recovered patients be more effective than the vaccine for SLE patients?

A: The efficacy of plasma infusions for COVID-19 is experimental.  This strategy has been tried for other infections and it does not always work.  Therefore, it should be done under supervision either in the hospital or part of a clinical trial.  Once we have scientific evidence for how or if to use this treatment, we will be able to provide more specific guidance.

COVID-19 Global Rheumatology Alliance
This registry is for healthcare providers to enter data about their rheumatology patients with COVID-19 infections. It is hosted on the REDCap survey platform at UCSF.

Quick Links

These sites provide reliable information on COVID-19- - Click the image to be directed to the website.
If you have questions, please contact us at 312-542-0002 or info@lupusil.org

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LSI promotes lupus awareness and complements the work of health care professionals by providing personalized resources for the lupus community while supporting research.