Yesterday, Dr. Robert Katz presented for our latest COVID-19 and the Lupus Community Web Meeting. Thanks to Dr. Katz and everyone who attended this fabulous event. If you missed it, you can see the entire web meeting here.
Lupus Awareness Month is here! It's hard to believe we have been living with social distancing since mid-March. Our Southern Suburbs Lupus Walk was originally scheduled for tomorrow. We've postponed that event. We are very clsoe to announcing our next event - we'll definitely get you information this month. Stay tuned!
Until then, you can use the information on our Lupus Awareness Month page to educate your community about lupus. Please let us know what you are up to - email us pictures to firstname.lastname@example.org or post to social media with #LSILupusAwareness
Thanks to Courtney Wulf for working with the Kane County Chronicle on a lupus article. You can read the article here. Thank you for always making lupus awareness a priority
And Tuesday we'll be participating in #GivingTuesday Now! #GivingTuesdayNow is a day of international giving.
Our goal is to raise $5,000 on (and before) May 5th. If you are able to help, your donation will be used to replace funds lost due to postponing our Southern Suburbs Illinois Lupus Walk!
Every $25 provides lupus information to an individual in need. Every $250 enables LSI to host a web meeting!
If you have any information that may be helpful to others in the lupus community, please send it to me at email@example.com.
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. Robert Katz
Thanks to Dr. Katz and everyone who participated in last night's webinar. The event was recorded and can be viewed here.
Lupus Awareness Month 2020
Lupus Awareness Month is the time of year when the lupus community takes time to educate their families, workplaces and neighborhoods about lupus. Education can be as modest as sending an email to your friends and family about lupus to organizing a Lupus Awareness Day at your office. We encourage you to get creative as you raise awareness about this often misunderstood disease.
As a result of the anecdotal evidence that chloroquine and hydroxychloroquine benefit in the treatment of COVID-19, lupus patients, whose lives depend on these drugs, are not able to get prescriptions filled.
Lupus patients are on a regimen of medicines to keep life-threatening flares (active disease) at bay. By upsetting the treatment regimen, they jeopardize their health.
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.
Lupus Is Front Page News
The front page of today's Daily Herald includes lupus as front page news: Patients with autoimmune diseases in suburbs struggle to find hydroxychloroquine
LSI is expanding our Individual Peer Support to assist during this crisis.
If you are interested in participating in this program or volunteering to talk to others in the lupus community, please complete the form here.
We ask personal information to help match participants and volunteers. We will not share your information with anyone without getting approval from you. If you have additional questions, please contact firstname.lastname@example.org.
COVID-19 & Lupus Web Meeting with Dr. Rosalind Ramsey Goldman
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
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.
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 email@example.com
If you have lupus and suffer from low energy or you feel tired often, you may qualify for the Lupus Intervention Fatigue Trial (LIFT) – a study being done to test two treatment programs to help people with lupus better manage their fatigue.
STUDY OF OMEGA-3 REPLACEMENT WITH KRILL OIL IN TREATMENT OF SYSTEMIC LUPUS ERYTHEMATOSUS
The study is a 24 week randomized, double-blind controlled multicenter study followed by an open label extension treatment for another 24 weeks. The purpose of this study is to determine whether the correction of the omega-3 deficiency may reduce disease activity in SLE patients.