Category: Living with Loeys-Dietz Syndrome

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Peer Support Groups

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.

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LDS and Allergic Disease

People with Loeys-Dietz syndrome (LDS) are more likely than others to have allergic diseases like allergies, eczema, asthma, and eosinophilic gastrointestinal disease. How do you know if you have an

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Genetics and Loeys-Dietz Syndrome

Loeys-Dietz syndrome (LDS) is a genetic condition that affects the body’s connective tissue. As a genetic condition, it can be traced back to your genes and may be passed on

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Did You Know?

Did you know that Loeys-Dietz syndrome (LDS) patients can have vision and eye problems? Hypertelorism (widely spaced eyes) is a typical characteristic of LDS, while myopia (difficulty seeing from afar)

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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.

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