New York, NY—May 4, 2017
Myositis can be a frustrating and mysterious disease, but connecting with others who understand the challenges can offer a shared mutual support to cope better and feel more in control. The HSS Myositis Support Group, the only New York City support group for those living with myositis, has been providing a welcoming environment for 20 years — celebrating this milestone during National Myositis Awareness Month encourages more people to know the signs and understand the importance of early diagnosis and treatment.
"Myositis is an autoimmune condition which occurs when a person’s immune system attacks its own muscles and causes inflammation," said HSS rheumatologist David R. Fernandez, MD. "The condition can affect each person differently, with symptoms ranging from fatigue and muscle deformity to rashes and overall weakness."
Founded in 1997, the HSS Myositis Support Group is where patients can meet and discuss the effects of myositis in their lives. During monthly meetings, patients share coping mechanisms for symptoms to improve their daily activities. The group features a variety of guest speakers on topics ranging from new medical research and associated conditions to physical therapy options and alternative treatments.
"I’m proud to say that for the past two decades, HSS has been a resource for patients to share their stories and truly relate to one another. It makes a big difference to have their trials understood and validated," said Suzan Fischbein, LCSW, social worker at HSS and coordinator of the Myositis Support Program. "Our 20th anniversary is a testament to how much HSS values providing that reprieve for our patients, their families, and friends."
"The group provides a sense of relief for me, as I know others are going through the same thing as me," said Linda Iferika, a New Jersey resident who has been attending the support group for six years. "We support each other, we learn from each other, we uplift each other, and I’m so grateful for this group."
"Even though we have the same condition, we all have different experiences, and Suzan has a way of making everyone feel special by being supportive and sensitive to everyone’s individual stories," added Iferika.
The support group will meet today at the Richard L. Menschel Education Center from 4 to 7 p.m. for a special celebratory meeting. Dr. Fernandez is the guest speaker and will discuss current myositis research and treatment. The celebration will include informal discussion and a presentation by a group member’s family sharing their journey with myositis. Another group member will share her experience as a long term partner of someone who was diagnosed with myositis six years ago and her views on being a “care partner.”
To learn about the HSS Myositis Support Group, please visit https://www.hss.edu/myositis-support-education-program.asp.