Tuesday, May 21, 2019: 6:30pm-8:30pm
Topic: Review the Global Spondyloarthritis Summit presentations and go over resources and services for Spondyloarthritis
Tuesday June 18, 2019: 6:30pm-8:30pm
The Rancho Bernardo Recreation Center
18448 W. Bernardo Dr.
San Diego, CA 92127
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.
Whether you are a mother, father, grandparent, spouse, aunt or uncle, cousin, sibling, significant other, or a friend, being a caregiver for a loved one suffering from a chronic illness is challenging. Caring for a loved one who is suffering from Spondyloarthritis (SpA) has its own unique challenges due to the nature of the disease. It is a journey filled with many mixed emotions, uncertainties, and stressors.
So the question is, who is taking care of you, the CAREGIVER?
The SAA is now offering two support groups focused on addressing the needs of caregivers: SoCal Parents Support Group (Focused towards parents with children ages 17 and younger) & The SoCal SpA Caregivers Support Group (For all caregivers).
The groups will provide education and information on spondyloarthritis, enable caregivers to understand the emotional and psychological impact of caring for a loved one, and provide a common ground where caregivers feel safe and comfortable sharing not only their challenges in caring for a loved one but also their own personal experiences.
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