Blog
Izzy Shares her Life with Chronic Illness
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 has a different connective tissue disorder that shares some features with LDS and is called Hypermobile Ehlers-Danlos syndrome (hEDS). On hEDS and the importance of talking about chronic illness, Izzy says: “I was diagnosed about 5 years ago after many years of dizziness, joint pain,
Katya, An Advocate for Travelling with Chronic Illness
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 health and wellness through diet, routine changes, pain relief, exercise, and mental health. About two years ago, Katya was diagnosed with multiple chronic conditions including Ehlers-Danlos syndrome (EDS), fibromyalgia, and scoliosis. She has experienced many symptoms since childhood, and is now finding ways to minimize
Travelling with Loeys-Dietz Syndrome: Prepare to Reach New Destinations
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 yes to these questions, keep reading to learn more. Travelling is an incredible opportunity that everyone deserves to experience. However, it can easily become complicated due to the daily medications or medical needs of chronic illness. Therefore, this article is dedicated to supporting and informing
Newsletter: Caregivers and LDS
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 Resources for caregivers and the people around them Dr. Cavalle-Garrido: LDS champion and caregiver Kimberly: mother and caregiver The Foundation’s new CORD membership
Newsletter: Connective Tissue in the News
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 remind investigators to apply for the LEAP Impact Award by March 22. How can a celebrity with a connective tissue disorder impact you? When well-known people share their health struggles, it helps to normalize and raise awareness of different health conditions. For rare diseases, awareness
Newsletter: Chronic Pain in Loeys- Dietz Syndrome
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 pain; where you can find pain clinics and resources. We also encourage researchers to submit a proposal for the LEAP Impact Award by March 22, 2022.