By: Lauren Founder of Higgy Bears Hi! My name is Lauren, and I am the founder of Higgy Bears, a nonprofit organization based in the US. I make special […]
Higgy Bears: For Kids & Teens with Scoliosis Read More »
Caroline Bell has been living with idiopathic scoliosis since she was a teenager. Now an adult with a spinal fusion, she is starting to tell her scoliosis story. Today, she
Living with Idiopathic Scoliosis Read More »
8 min. read Transitions in medical care can be common for individuals and families living with Loeys-Dietz syndrome (LDS) or other complex or chronic conditions. Transitions may include changes in
How to Transition from Pediatric to Adult Care with Loeys-Dietz Syndrome Read More »
6 min. read How can students and families with Loeys-Dietz syndrome (LDS) prepare for school? What should educators know about students with LDS? As the school year approaches, LDS families
School and Loeys-Dietz Syndrome: Guidance for Families, Educators, and Students Read More »
Izzy is a genetic counselling student at the Icahn School of Medicine at Mount Sinai with a special interest in genetic connective tissue disorders. She doesn’t have Loeys-Dietz syndrome, but
Izzy Shares her Life with Chronic Illness Read More »
Katya is an advocate and influencer using social media to share her experiences, insights, and resources for travel and daily life with chronic illness. Katya covers topics such as maintaining
Katya, An Advocate for Travelling with Chronic Illness Read More »
9 min. read Do you love to travel? Do you want to travel more? Are you travelling with a chronic illness or with someone that has one? If you answered
Travelling with Loeys-Dietz Syndrome: Prepare to Reach New Destinations Read More »
In honour of National Caregiver Day on April 5, this issue is dedicated to the many LDS caregivers and the people who support them. We cover: Navigating your caregiver journey
Newsletter: Caregivers and LDS Read More »
In this issue, we cover well-known people with three types of connective tissue disorders: Loeys-Dietz syndrome, Marfan syndrome, and Ehlers-Danlos syndrome. We also discuss the importance of multidisciplinary care and
Newsletter: Connective Tissue in the News Read More »
Chronic pain is a common problem for people with Loeys-Dietz syndrome. In this issue, we discuss: why you may be having chronic pain; what you can do to decrease your
Newsletter: Chronic Pain in Loeys- Dietz Syndrome Read More »
