NEW FREE EVENTS added! Lupus Awareness Month, COVID-19 & the Lupus Community eNewsletter!
Call your doctor: If you think you have been exposed to COVID-19 and develop a fever and symptoms, such as cough or difficulty breathing, call your healthcare provider for medical advice.
Good news! LSI's petition for HCQ for Lupus Patients First received a response from the Illinois Department of Financial & Professional Regulation- PRESCRIBER GUIDELINES DURING COVID-19 EMERGENCY DECLARATIO! Read the declaration here.
Congratulations to everyone who signed the petition and shared their stories. Together, we do make a difference.
Lupus Awareness Month is underway and we want to know what you're up to. Please share your sotries iwth us at info@lupusil.org.
Thanks to everyone who donated to LSI's #GivingTuesdayNow! The campaign is officially over however we've left the link up and donations are still welcome.
We're very excited to announce an educational webinar series that starts 2 weeks from today. The Us in Lupus series is free and open to the public. Registration is required in order to get login information. Topics are The Immune System and Lupus, Managing Lupus and Lupus Resources. The events will be presented by E. Aliciee Griffith, Patient Engagement Lead, GSK.
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
Response to LSI's Petition HCQ to Lupus Patients First
Thanks to thousands for signing our petition to HCQ to Lupus Patients first petition! The result is the PRESCRIBER GUIDELINES DURING COVID-19 EMERGENCY issued by the Illinois Department of Financial and Professional Regulation. DECLARATION. Read the declaraton here.
Us in Lupus Educational Webinar Series
Join us for a series of 3 educational Webinars presented by E. Aliciee Griffith, RN, BSN, BS, Patient Engagement Lead, GSK.
All 3 events begin at 6pm and will include time for questions and answers.
Earl's Kitchen + Bar Offers Discount for Lupus Awareness Month!
My name is Kimberley Major. On December 11th 2015, I was diagnosed with SLE and Rheumatoid Arthritis. Over the past 5 years I have been on a roller coaster ride of flares, hair loss, skin rashes and severe joint pain, so I decided to make a drastic lifestyle change that began with food.
I am currently a manager at Earls Kitchen + Bar in Lincoln Park. I couldn’t be more thankful to work for a company who has taken the time to create an anti-inflammatory grocery pack to accommodate those who are immunocompromised during this global pandemic.
While I struggle daily with my own personal auto-immune disease, I also spent a month taking care of my Mom who is a COVID-19 survivor. My entire world turned upside down and Earls was there for me every step of the way.
With love and support Earls Kitchen + Bar in Lincoln Park is launching an Anti-Inflammatory grocery pack for the month of May with a total of 30% off with phone-in orders.
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.
Lupus Research Update Dr. Ailda Nika discusses a recent lupus research article
While we are all forced to deal with the unprecedented times of a new pandemic, the lupus community continues to remain strong and supportive, as research and literature continues to emerge to new levels of hope both therapeutically and understanding the pathophysiology of lupus.
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.
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
Lupus and CoVID-19. An Update Robert S. Katz, MD and Ben J. Small, MD
Many lupus patients are concerned about how they would handle COVID-19 if they contracted the virus. The answer depends on the patient’s age and the severity of the patient's underlying lupus.
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 mary@lupusil.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
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
The LSI Associate Board is hosting a fundraiser to benefit the LSI's mission! It promises to be an eventful night with live music, educational speakers and a silent auction!
Friday, June 5, 2020 | 6:30 PM CDT to 11:30 PM CDT
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.
LSI promotes lupus awareness and complements the work of health care professionals by providing personalized resources for the lupus community while supporting research.
