#ShavingLives

This Copiague girl is shaving her head on June 21st if she can raise awareness for a rare genetic disorder called Loeys-Dietz Syndrome. Kristyn was born and raised on Long Island. She graduated from John F. Kennedy HS and is a Stony Brook alumnus. She is looking to her community to help her help others.

Loeys-Dietz Syndrome is a connective tissue disorder similar to Marfan's. Connective tissue is in between every cell in your body, so these disorders tend to affect multiple body systems. However, the most alarming symptom is aortic aneurysms which are prone to dissection, even in children. Aortic dissections are often fatal.

Because LDS was discovered in 2005, it is largely unknown in the medical community. Patients have trouble getting diagnosed, getting the care they need, and getting insurance approval for life saving procedures. Many people aren't diagnosed until after a medical emergency or an immediate family member passes away suddenly, prompting genetic testing. There are many symptoms and physical features associated with these disorders that should send up red flags and encourage full heart exams, but very few doctor's make these connections since the disorders are so unknown.

It is our job to help educate the medical community and make sure these patients get diagnosed early, are monitored, and live long, productive lives. If you would like to share or donate, the official #ShavingLives Facebook page can be found here: https://www.facebook.com/ShavingLivesForLDS/