The SpA Caregivers Support Group

My name is Belen Diaz de Leon-Gonzalez and my 16-year-old son was diagnosed with Ankylosing Spondylitis (AS) in August of 2017. Upon learning of my son’s diagnosis, I experienced overwhelming emotions including guilt, anger, anxiety, and fear. I had never heard of such a disease and I was scared for my son. I started researching about AS, but the information I read only validated my anxiety and fears. My son’s rheumatologist was very patient and supportive. He provided and has continued to provide ongoing education regarding AS as well as reliable resources where both my husband and I have gained knowledge about the disease. This knowledge has provided a sense of control and peace. 

Having a child diagnosed with a chronic disease such as AS presents parents with an exuberant amount of challenges.  My desire is to create an emotionally safe setting where parents who are experiencing similar challenges can share their concerns, share their stories, ask questions, and most importantly, gain knowledge, strength, and find hope.  As parents, we need to be resilient.  Learning positive coping strategies will help build resilience.  Also, my goal is to invite experts from the field who can provide education.  These experts would include:  pediatric rheumatologist, ophthalmologist, dentist, physical therapist, chiropractor, nutritionist, as well as other health and wellness professionals.  The better informed and educated we are as parents, the better we can help our children to thrive and live a long and healthy life with AS. 

For the past 24 years, I have been working as a hospice medical social worker where I provide emotional and psychological support to patients and their loved ones during the end of life journey. In 1992, I received a Master’s Degree in Social Work from USC. In my free time, I enjoy working in my vegetable and rose gardens, reading, walking, and listening to music. I also enjoy spending time with my family and hiking our majestic state and national parks.