Help Spread Loeys-Dietz Syndrome Awareness on Social Media!
Awareness of Loeys-Dietz syndrome leads to early diagnosis, treatment, and an extended lifespan. The most powerful way we can raise awareness is through you, our volunteers! Your circles of relatives, friends, co-workers, and neighbors, your knowledge, your personal journey, and your commitment cannot be matched by anyone outside of our community.
In addition to sharing information from our social media accounts, you can create your own to increase awareness. We invite you to join in promoting #LoeysDietz awareness on social media!
Ideas for Social Media
If you have a Facebook profile, make sure you “like” the Loeys-Dietz Syndrome Foundation page at https://www.facebook.com/loeysdietz and https://www.instagram.com/loeysdietz so that our posts appear in your news feed.
Comment and share our posts, pictures, and videos, especially during Loeys-Dietz Syndrome Awareness Month.
Create your own posts with links to LoeysDietz.org to educate your personal networks about Loeys-Dietz syndrome. Use our hashtag #LoeysDietz in all your posts for easy tracking. Tell your story, explain why Loeys-Dietz syndrome (LDS) awareness is important to you, and promote the facts. Encourage your Facebook friends to share your posts to multiply your impact.
Post photos and share what you’re doing for LDS Awareness Month on our Facebook page.
If you are not on Facebook or Instagram, now is a good time to join! Create a profile (for free) on facebook.com or instagram.com. Then “friend” or “like” people you know (friends, relatives, neighbors) to create your personal network before March begins. Then, when you post about LDS awareness, you will be sharing information with a large, and growing, group of people.
Awareness Graphics
Facebook Cover & Email Images
Profile Picture
Factoids
Factoid Text
You can use a translator to generate statements in another language:
Loeys-Dietz syndrome is a lifelong genetic aortic and vascular condition that impacts the body’s connective tissue.
Loeys-Dietz syndrome affects every individual living with the condition differently, including variations within families.
Loeys-Dietz syndrome is a unique condition related to Marfan syndrome. Many traits are shared between these conditions.
Loeys-Dietz often affects the connective tissue in the heart, blood vessels, bones, joints, and skin.
Each child of a person living with Loeys-Dietz syndrome has a 50% chance of inheriting the gene variant.
Aortic aneurysms are the most commonly seen type in Loeys-Dietz Syndrome, but aneurysms can form in other arteries.
Loeys-Dietz syndrome can predispose people to inflammatory conditions like asthma, eczema, and food and environmental allergies.
People living with Loeys-Dietz syndrome may experience hypermobility: joints they can move beyond typical range.
Loeys-Dietz syndrome often affects the eyes: including nearsightedness, retinal detachment, and eye muscle weakness.
Loeys-Dietz syndrome can impact a person’s feet, sometimes causing “flat feet” or club feet”.
Connective tissue provides strength and flexibility to bones, ligaments, muscles and blood vessels. Loeys-Dietz syndrome can impact all.
People living with Loeys-Dietz syndrome may experience hearing loss.
People with Loeys-Dietz syndrome experience dural ectasia, the widening of a membrane surrounding the spinal cord, at a higher rate than the general population.
Many people with Loeys-Dietz Syndrome encounter dental issues, such as an abnormal palate, malocclusion (improper bite), and enamel defects.
Craniosynostosis, the premature fusion of bones in the skull, can be found in people living with Loeys-Dietz syndrome.
Some people with Loeys-Dietz syndrome have restricted joint movement called contractures.
Loeys-Dietz syndrome can cause spinal issues, including scoliosis, dural ectasia, cerebral spinal fluid leaks, and cervical spine instability.
Many people living with Loeys-Dietz syndrome have soft, “velvety” and translucent skin.
People living with Loeys-Dietz syndrome may find that they bruise easily or have abnormal scarring.
Tortuous blood vessels are often found in people with Loeys-Dietz. Did you know that this trait was the inspiration for our logo?
More Sample Posts
Note: If you include a photo of yourself or a family member, you can gain more response!
Loeys-Dietz syndrome isn’t always inherited. Sometimes it can come from a spontaneous mutation. Go to loeysdietz.org to learn more. #loeysdietz
Parents don’t always pass on the Loeys-Dietz syndrome gene variant to their children. Learn more about why at loeysdietz.org. #loeysdietz
It’s really all about the genes when it comes to Loeys-Dietz syndrome. Find out more about the gene variant at loeysdietz.org. #loeysdietz
Because Loeys-Dietz syndrome affects connective tissue, it can affect what activities and exercises someone with LDS can do. Learn more at loeysdietz.org. #loeysdietz
Loeys-Dietz syndrome can really affect the entire body since connective tissue is found throughout the body. Learn how by going to loeysdietz.org. #loeysdietz
Just like no two people are the same, no two Loeys-Dietz syndromes are the same. Read stories about people’s different experiences with LDS by going to loeysdietz.org. #loeysdietz
Did you know that there are conditions related to Loeys-Dietz syndrome? Learn about them by going to loeysdietz.org. #loeysdietz
These are just the unique characteristics of Loeys-Dietz syndrome. Find out about other characteristics by going to loeysdietz.org. #loeysdietz
Loeys-Dietz syndrome can affect the body in so many ways. Go to loeysdietz.org to learn more. #loeysdietz
Hypermobility is one of the reasons why some people with Loeys-Dietz syndrome have to limit their activities. Learn more at loeysdietz.org. #loeysdietz
Aneurysms can happen at anytime and anywhere in people with Loeys-Dietz syndrome. Find out more at loeysdietz.org. #loeysdietz
You can sometimes see the signs of Loeys-Dietz syndrome in the eyes. Learn why that is at loeysdietz.org. #loeysdietz
Want to walk in the footsteps of someone with Loeys-Dietz syndrome? Then learn about their feet at loeysdietz.org. #loeysdietz