Charla de Lupus (Lupus Chat)® Peer Support Program

Charla de Lupus/Lupus Chat® Services

Do you or someone you know have lupus? The Charla Program is here to help.

The Charla program is offered in English and Spanish. The program consists of the following:

• Charla Line, a toll free national support and education helpline, which screens and matches callers with peers for ongoing telephone support and education.
• Onsite Peer Support Outreach at four hospital-based clinics and Community Collaborations
• Charla Teen, Young Adult and Parent Support Groups include educational forums and special events.
• Publication for Inquiring Teens with Lupus: Our Thoughts, Issues & Concerns
• Community, Professional Presentations and Health Fairs as well as organizational and federal collaborations

Call the Charla Line

Do you want to speak with someone else with lupus from the comfort of your own home who you can share your experiences and stories with?

The Charla Line is a free telephone support and education service for people with lupus and their loved ones offered in English and Spanish. The Charla Line has trained peer volunteers (a person affected by lupus) who can provide support and education to children, teens and adults living with lupus as well as family members, through its toll free number.

212.606.1958
866.812.4494 (toll-free)

As one Charla client said, “It’s really amazing connecting with someone else who has lupus…my peer health educator explained the illness to me in words I would understand.”

On-site Outreach at Community Clinics

One-to-one contact is available on site at various rheumatology clinics in NYC. Program associates, peer health educators, and a licensed social worker meet with patients during their scheduled appointments to provide on-going support and appropriate services and referrals.

In addition to working at HSS the program also operates on-site at:

• Mount Sinai Medical Center (since 1996)
• NewYork-Presbyterian Morgan Stanley Children’s Hospital, Pediatric Rheumatology Service, Columbia Medical Center (since 1999)

Community Collaborations

Our CSP goals are to:

• Increase access to high quality reproductive health care for adolescents with lupus.
• Improve culturally relevant knowledge, self-management skills, and self-efficacy related to reproductive health care and sexual health for adolescents with lupus.

Charla’s Community Service Plan Partners:

• Mt. Sinai Medical Center-Adolescent Health Center
  • Sinai Peers Encouraging Empowerment through Knowledge (SPEEK)
• NewYork-Presbyterian Morgan Stanley Children’s Hospital, Pediatric Rheumatology Service, Columbia Medical Center
• Children’s Aid Society
• Community Healthcare Network
• Planned Parenthood of New York City, Inc.

Learn more about Charla’s participation in Hospital for Special Surgery’s Community Service Plan

Contact Charla's CSP:
Priscilla Calvache, LCSW
Assistant Director for Lupus Programs & Community Engagement
212.774.2108
calvachep@hss.edu

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Video: Learn about the Charla de Lupus Program

Learn more about our program from Priscilla Calvache, LCSW, Assistant Director, Lupus Programs and Community Engagement. Also available in spanish (en español).

Our program provides materials in both English and Spanish to help people better understand and cope with lupus and to share with family, friends and loved ones. These materials can also be used by community organizations to spread awareness about lupus.

If you would like to request hard copies of our materials, please fill out the following form: Materials Request Form (pdf). Fax completed forms to 212.774.2333 or email the form to charla@hss.edu.

For Inquiring Teens with Lupus

This 20-page booklet was written by a young woman diagnosed with lupus as a teen and takes into account some of the specific issues, both medical and psychosocial, relevant to adolescents who are living with lupus. A list of resources for teens with lupus is also included.

This publications is available in English, Chinese, and Spanish.

Chita Shares a Secret

Living with lupus can be confusing and challenging, especially for a young child. That’s why HSS volunteer Judy Campbell wrote the book, Chita Shares A Secret, to give children diagnosed with lupus the courage to cope and live with this condition, as well as to help them rely on the support of the care team, family and friends.

Outside Resources

Teen-Specific Resources

Organizations & Foundations

• Arthritis Foundation
• Camp Sunshine – a retreat for children with life-threatening diseases and their families
• National Kidney Foundation (Greater New York chapter)
• This is the Lupus Foundation of America. It can give you local resources and doctors in your area. There is also lupus talk for teens in this website as well.
• Project Sunshine – provides programs for children and families living with medical challenges
• Starlight Children’s Foundation
• Make-A-Wish Foundation

Mental Health & Support

• Information for parents about teen depression and other mental health issues
• Mental Health Information for Teens and Parents

Healthy Relationships

• General information for teens about what is and is not healthy in a teen dating relationship
• Information for teens on managing and accessing relationships with family, friends, casual and romantic relationships

Teens and Chronic Disease

For teens with chronic diseases – personal stories, advice, poetry

Personal story of a teen with Lupus

Reproductive Health Resources

• The Children's Aid Society:
  • Bronx Family Center
  • Dunlevy Milbank Center
• Community Healthcare Network
• Teens Health - General health and sexual health information for adolescents
• Mount Sinai Adolescent Health Center
• Sutter Health Palo Alto Medical Foundation - Tips for parents on how to talk about sexual issues with their teens
• Young Men's Health - General information on sexual health topics for adolescent males

Our Volunteers

We are always seeking volunteers (ages 18 and older) to help our programs grow. Participants find the training and volunteer experience extremely rewarding. The video below describes the impact of peer volunteers and what to expect:

Volunteer Opportunities: Peer Health Educators/Volunteers

The Charla de Lupus/Lupus Chat Program is a winner of the American Hospital Association HAVE Award and relies on a tight-knit group of passionate volunteers and educators.

• Peer Health Educators for Charla help community members understand and cope with lupus.
• Program Volunteers for Charla help support administrative aspects of maintaining the program.
• Summer Internship opportunities are available.

Make a Difference: Join a Group or Volunteer

If you live in the New York City area and would like to volunteer with Charla, we encourage you to contact us at 212.606.1958 or 866.812.4494 (toll-free). Read the stories below of those who joined a group and received support, then helped others.

Arlety’s Personal Story

I recall lying in bed in so much pain that I didn’t want to get out of bed. I decided to go to the nearest hospital, the doctors at the emergency room noticed how swollen I was, and they decided to call the Rheumatology department. 

My doctor informed me that the inflammation was due to a problem going on with my kidneys. In order to make sure it was lupus, I needed to undergo a biopsy. The biopsy confirmed that it was indeed lupus. At that moment, I was so devastated and hopeless.

At first, I thought that my life was over and that everything was going to change. I was hurt that I had to stop doing the things I enjoyed and had to start taking medication for the rest of my life. I was on high doses of prednisone that made my face extremely swollen. I was losing my self-esteem and felt horrible about myself. My hair, which was very thick, was falling out day by day.

After many months of taking my medication, my doctor slowly started to decrease the prednisone. Little by little, my face started to go back to the way it was. I started to feel more confident about my health and how I looked. My doctor called me her “best patient” because I always took my medication and did what I was told in order to become better.

Now, at the age of 23, I can say that my health has never looked better. I have the support of my family who has always stood by my side no matter what. They are my support system, and they have helped me to cope with lupus so positively. I am now in my last semester of college, graduating with my Bachelor’s degree in Forensic Psychology. I am working part time at a great organization on the weekends and actively volunteering at the Charla program, trying to encourage and lift the spirits of those that feel hopeless just like I did. Oh, and my hair grew back even better this time!

Marielin’s Personal Story

My first symptom happened one freezing winter night in late October 1996. I was on my way home from a party with friends and my cold hands started to lose sensation, feel tingly, numb and turned blue. Up until that moment I hadn’t noticed anything unusual with my health. I began to feel constant pain in all of my joints. I couldn’t stand up straight, and I couldn’t get in or out of bed or cars easily. I had difficulty getting around. I lost my appetite and started to lose a lot of weight. I had terrible migraines and fevers of 102.

Eventually, my aunt saw through my self-pity and inspired me to stand up for myself regardless of lupus, by saying exactly what I needed to hear. She inspired me to take my medications, to get up and start healing. I got better by the end of summer and went back to school.

I manage my lupus by educating myself about lupus, medications, and alternative treatments. I take my medications daily, the way they are supposed to be taken. I eat healthy by paying attention to the foods that make me feel good and noticing the ones that don’t. I exercise. I meditate. I share my feelings and thoughts with a therapist every other week. I participate in personal training, development programs, and communities that uplift me. I make time for fun—enjoying time with my husband, friends and family. I get a lot of rest. I surround myself with positive, empowering people that make me feel good. I keep stress to a minimum. I do my best to stay in the present moment and trust the flow of life. I also volunteer with the Charla de Lupus (Lupus Chat)® program.

I’m most proud of my volunteer work with the Charla program and how far I’ve come since my diagnosis. Almost 13 years ago I entered Hospital for Special Surgery with an incapacitating illness. Not only did I become a grateful patient to 10 extraordinary physicians and six compassionate social workers but I also became a volunteer, a health educator and community service plan associate for the Charla de Lupus program.

Marina’s Personal Story

I did everything my doctors told me to do for the first few months until the reality of living with two serious conditions with no cure hit me. I was frustrated with being different from my friends; the moon face, always feeling tired, and not being able to play in the sun. I was upset and stopped taking all my medications for an entire month up until my monthly rheumatology appointment. During this time, I experienced, nose bleeds, petechiae, severe headaches and unimaginable weakness.

I told my doctor that I stopped all my meds for a month and she was very disappointed. She emphasized the importance of taking all my medications. Up until this day, I do everything all my doctors tell me to do no matter how much I hate it. I was lucky something serious didn’t happen, and I use this advantage to educate others about how serious lupus really is.

Lupus is not a death sentence; it can be managed. I noticed that eating healthier foods such as whole grains and vegetables rather than fried foods greatly improved many side effects caused by lupus or my medications. Talking with friends, participating in fun activities, and going outside on nice days are good ways to reduce or avoid stress. Also, it is very important to maintain good relationships with doctors in order to get the best treatment. No matter how difficult life with a chronic disease may seem, there is light at the end of the tunnel. Lupus is in me but it does not define who I am.

Contact us

For general inquiries, please contact us at charla@hss.edu

Jillian A. Rose-Smith, PHD, MPH, LCSW
Vice-President, Chief Health Equity Officer
646.714.6673
rosej@hss.edu

Priscilla Calvache, LCSW
Assistant Director for Lupus Programs & Community Engagement
212.774.2108
calvachep@hss.edu

Giselle Rodriguez, LCSW
Program Coordinator, Charla de Lupus (Lupus Chat)®
646.797.8746
rodriguezgi@hss.edu

Lillian Mendez
Senior Program Associate 1, Charla de Lupus (Lupus Chat)®
212.774.2108
mendezl@hss.edu

Kimberly Cabrera
Program Associate, Charla de Lupus (Lupus Chat)®
646.797.8474
cabrerak@hss.edu

Upcoming Charla Events

The Charla de Lupus (Lupus Chat)® program facilitates and participates in a number of events including a monthly support group. Please see a list of our special activities below, as well as our Calendar of Events in English and Spanish (español).

Special Activities

• Lupus Research Alliance - Walk with Us to Cure Lupus
• Arthritis Foundation - Walk to Cure Arthritis
• Charla Annual Picnic at Riverbank State Park
• Comedy Night
• Girls Night Out
• Holiday Party/Talent Show
• Off-Broadway Shows
• Spa Day for Parents

Community, Professional Presentations and Health Fairs

If you would like to request a presentation or our participation in a health fair, fill out the following form:

• Presentation or Health Fair Request Form (PDF)

Fax completed forms to 212.774.2333 or email the form to charla@hss.edu.

We’d love to hear from you!

For more information about our support group and how to attend, or any other Charla services, please contact us at: 212.606.1958 / 866.812.4494 (toll-free) or charla@hss.edu

¡Queremos escuchar de ti!

Para más información sobre nuestro grupo de apoyo y como participar, o cualquier otro servicio de Charla, comunícate con Charla al 212.606.1958 / 866.812.4494 (toll-free) o envíanos un correo electrónico charla@hss.edu