> Skip repeated content

SLE Workshop

SLE Workshop

The SLE Workshop is a support and education program inspired by the desire of people living with lupus to learn more about the illness and its treatment. This program has been ongoing since 1985 for people with lupus and their families and friends. Lectures by lupus experts are followed by an informal discussion.

What to expect

  • During the first hour, a guest speaker addresses a topic of interest to the members. Topics can range from treatment and medications, to fatigue, lupus symptoms, bone health, physical therapy, depression, and managing stress.
  • For the second hour, there is an open discussion to share thoughts and feelings about the topic, or other related concerns.
  • The program generally meets the fourth Thursday of each month from 12-2pm from September through April at HSS in the Richard L. Menschel Education Center on the 2nd Floor.

Once you become a member of the Workshop, you will receive monthly mailings. These mailings include a flyer describing the month’s topic and guest speaker. There is also a special one-page newsletter, with content relevant to members. You will also have access to the group coordinator who can provide information and referrals about lupus-related support and services.

New member information

A registration process which includes a phone interview is required before your first meeting. Before joining the group, please contact us at 212.774.7654 for a telephone interview. You will have the opportunity to "meet" the program coordinator over the phone. You’ll learn more about the workshop, and we’ll have a chance to learn more about you so we can best meet your needs.

SLE Workshop support

Lupus affects everyone differently and can change over time. Living with systemic lupus erythematosis (SLE), a complex illness, can present many challenges. For example:

  • You may look fine, but at times experience fatigue, pain, or symptoms that are hard to predict. 
  • You will be working closely with your doctor and health care team to understand and make informed choices about treatment.
  • Keeping up with the usual things you would like to do at home, at work, or socially may be hard at times. 
  • Your mood and feelings about yourself and others may be affected by these changes, by lupus itself, or by treatment side-effects.   
  • Even close family members may have a tough time relating to the impact of your illness in a way that offers consistent comfort.

Through sharing personal experiences of coping, the members also provide essential support to each other. In our members’ own words:

“It took away the veil of mystery of what this disease is about. - Hope Hodson

“Whatever I can learn from other people with lupus is beneficial to me. It put things in perspective.” - Kathleen James

“It allowed me to be a better partner with my doctor and take more responsibility for my body and my healthcare.” - Karen Andreozzi

Get involved with SLE Workshop

As someone living with lupus or a family member or friend, we welcome your input and feedback. Volunteers, for example, have helped to plan meetings, share their experience with lupus with new program coordinators, and develop publications. If you are a member and have an idea to contribute, please contact the Workshop program coordinator at 212.774.7654.

Additional resources

Not everyone can join us in person. Each year, summaries of selected workshop presentations are published online. You can review and access these at any time. Learn about HSS' national lupus support and education programs:

Visit the Lupus and APS Center of Excellence.

Access additional lupus community resources.

Contact us

SLE Workshop staff

To learn more, contact:

SLE Workshop Coordinator
212.774.7654

May-September, you may also contact:

Roberta Horton, LCSW, ACSW
Director, Dept. of Social Work Programs
hortonr@hss.edu
212.606.1033

 

LupusMinder® Mobile App for People With Lupus

Photo of mobile phone with Lupus Minder app.

Now available for free download, the LupusMinder app was developed by HSS to track medications, daily symptoms and appointments. Visit hss.edu/lupusminder.