Celebrating Champions – Success stories from the IMHA community: Curvy Girls^®

By Gillian Newman, IMHA Research Ambassador

Curvy Girls^® is a charitable organization dedicated to provide peer-led support for girls who are diagnosed with scoliosis, and their families.

Scoliosis is a musculoskeletal condition that causes the spine to develop an abnormal curvature, typically during adolescence. While there is no cure for scoliosis, numerous treatment options have been developed to slow and stop the progression of the spinal curvatures.

Scoliosis is measured in degrees which marks the severity of curvature. Patients with curves under 45° will usually receive a back brace. Over the last decade, the braces available to scoliosis patients have been transformed, offering much more comfortable options that are designed to not only provide better results but to ease some of the emotional struggles that come with trying to hide the brace beneath clothing.

Patients with curves over 50° are considered for surgery. Spinal fusion surgery has undergone numerous changes since its inception. Traditional surgery can last upwards of ten hours and recovery takes around two months. This can severely interrupt the active lives of young patients.  In recent years, the scoliosis community has witnessed an increase in the variety of surgical methods available, most notably Vertebral Body Tethering and Apifix (Israel). I understand that these new surgical interventions shorten recovery time and permit mobility.

For many patients, the process of deciding which treatment to pursue can often be quite challenging. In addition, patients face the emotional impact of the condition. Many patients with scoliosis express feeling isolated from peers and some feel anxious, nervous, and upset about appointments, treatment plans, and other matters.

In 2006, Leah Stoltz had become all too familiar with the emotional impact of scoliosis. While still in high school, Leah founded Curvy Girls^®, a non-profit organization to support other girls with the same condition. With treatment for scoliosis occurring eight times more in girls than boys, Leah wanted to provide support for girls with the same condition. Her dedication to providing support and increasing discussions around mental health and wellbeing has allowed the organization to grow so that today Curvy Girls^® has over 100 chapters around the world.

Curvy Girls^® offers monthly in-person support group meetings where girls and their families can share their experience, ask questions, and gain advice from other girls with the same condition. For many, the beginning of their scoliosis journey and experience with Curvy Girls^® was filled with uncertainty, anxiety, and feelings of isolation, as they felt different from their peers. However, as girls attended monthly meetings, they were able to meet other girls with the same condition. They learned more about their condition and developed strong bonds and long-lasting friendships. Girls have mentioned that since joining Curvy Girls^®, they have become much more positive about their scoliosis and treatment options.

Curvy Girls^® continues to invest in the lives of both members and chapter leaders through the biennial convention that takes place over three days in Long Island. Leaders are able to attend intensive workshops to develop skills in leadership, organization, and facilitation. Workshops are set up for members to engage in positive activities to promote health and wellness, mindfulness, and increasing self-confidence. Many members and leaders continue to use their experience and skills to promote scoliosis awareness, such as bringing school medical screenings to local school boards. In addition, many members have developed professional connections with various orthopaedic surgeons and orthotists, allowing them the opportunity to attend various conferences to speak on behalf of Curvy Girls^® about the power of peer support.

Curvy Girls^® has grown into a large organization that has changed the trajectory of how scoliosis is both treated and discussed within medicine, mass media, social media and in the everyday lives of those living with the condition.

Date modified:

2019-03-08