Tuesday, May 28, 2019
Topic: Roundtable Discussion
*RSVP via this form with your information as they appear on your ID, at least 48 hours prior to our meeting, per building security.
Alfred P. Sloan Foundation
630 Fifth Avenue, Suite 2200
(45 Rockefeller Plaza)
New York, NY 10112
We host support group meetings every other month, generally on Tuesday evenings, with the format being a round table discussion. In the months in between our formal meetings, we also have informal social gatherings at coffee shops, bars, etc, usually on weekends or Friday evenings.
Hi! I’m Sandra. I was diagnosed with spondylitis in September 2015, after having symptoms for about a year. I started going to the group in January 2017, and I found it so helpful to meet others who understood what I was going through. I joined Ariana as co-leader in August 2017 so I could help give back the support I received when I first joined. I’m also a clinical social worker, and I enjoy facilitating groups. Fun fact: I ride my bike all over the city and find that this really helps my back pain!
a childhood, adolescence, and young adulthood filled with sports and physical
activity, I was suddenly stopped in my tracks with a SAPHO syndrome diagnosis
in the summer of 2014. I found little comfort in the diagnosis and
just wanted to know when ‘it’ would go away. When would I be able to
run again? What day will I wake up feeling fine and ready to
go? When will the medications finally work and fix this problem?
has left me with many more questions than answers. It felt like so
many things were taken away from me instantly, and with no recovery in sight.
through this diagnosis and condition has forced me to accept the unknown, and
taught me how to regulate and pace my life differently. Over time I’ve
come to better terms living with this condition, though not without kicking and
screaming. I’m finally coming around to implementing a sustainable and
fulfilling lifestyle. I’m fortunate to have an effective and compassionate
rheumatologist I’ve been seeing since the onset and who has been very
supportive in my search for stability, but my improved future is in
part attributable to my involvement in the NYC SAA support group. Just
meeting others with similar circumstances has been life-changing. As one of the
leaders, I hope to contribute in a meaningful way to the NYC group and help
others discover glimmers of normalcy I once found impossible to envision. Today
I manage my condition through diet, exercise, mental hygiene, and leaning on my
If this is your first time joining us, welcome! We are excited to have you. To make sure that all meetings are a supportive, safe space for all, we’ve put together some group guidelines. Check it out!
1. Confidentiality. What is said in the group stays in the group. You can share general information with others outside the group, but please don’t use names or identifying information of members.2. Respect. Treat other group members with respect and understanding 3. Remember that everyone’s experience is different, and what worked for you might not work for someone else. As we say in social work, everyone is an expert on their own life!4. Give everyone a chance to speak. Try not to monopolize the discussion!5. Ask a doctor. Remember that most of us (group leaders included) are not doctors, so be careful about giving or taking medical advice.
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16360 Roscoe Blvd. Ste. 100Van Nuys, CA 91406
(800) 777-8189 U.S. only
or (818) 892-1616*Please note: This is not a Crisis Hotline. If you are in a life-threatening crisis, please dial 911 for immediate help in the US. Please follow this link for crisis intervention resources.