Individuals with rare diseases often find themselves navigating uncharted territory, as there may be limited knowledge about their condition. In such circumstances, peer support groups offer a lifeline, providing a community of individuals who share similar experiences and can offer valuable support.
Category: Living with Loeys-Dietz Syndrome
Caregivers play an invaluable role in the lives of people with Loeys-Dietz syndrome (LDS). However, caregiving can be challenging. It is important to talk about navigating this journey and finding
People with Loeys-Dietz syndrome may experience pain throughout the body. Pain can be chronic (lasting more than three or four months) and negatively impact quality of life. To help decrease
What is Loeys-Dietz Syndrome? Loeys-Dietz syndrome (LDS) is a rare genetic disorder that affects the connective tissue in the body. The disorder was first described in 2005 by Dr. Bart
If you or a loved one is affected by Loeys-Dietz syndrome, you may have questions about the condition and what living with Loeys-Dietz syndrome will look like.
To answer your questions, these blog articles will explore topics related to Loeys-Dietz syndrome, including: genetics, signs and symptoms throughout the whole body, treatment and management plans, family planning options, and day-to-day life such as: exercise, nutrition, mental health, chronic pain, caregiving, and attending school and work.
If you have further questions, you may contact our free Loeys-Dietz syndrome helpline at 1-888-LDS-FCAN.
To hear from people living and working with Loeys-Dietz syndrome, read our LDS Stories.
About LDS: Loeys-Dietz syndrome (LDS) is a rare, connective tissue disorder that was first described in 2005. LDS is also a genetic condition and is caused by a gene mutation (change) in the SMAD2, SMAD3, TGFB2, TGFB3, TGFBR1, or TGFBR2 genes.