What is Loeys-Dietz syndrome?

Dianna M. Milewicz, MD, PhD, is the President George H.W. Bush Chair in Cardiovascular Medicine, Vice Chairman of the Department of Internal Medicine, and Director of the Division of Medical Genetics at the University of Texas Medical School at Houston.
she is the Director of the John Ritter Research Program in Aortic and Vascular Diseases.
Dr. Milewicz is a former chair and current member of our Professional Advisory Board and chairs the Thoracic Aortic Disease Coalition, convened by The Marfan Foundation.
For more information about Loeys-Dietz syndrome, visit:
marfan.org/loeys-dietz

[@frag6850]

I really wish more people knew about this. It would make finding a working cure SOO much easier.

[@susanread5657]

Genetic tests confirmed type 2 but i was initially diagnosed with Erndheim's Medial Necrosis after spending chunks of my younger years in the cardiac ward. I recently lied on my driver's application because i'm not going to not drive. Australian medicare doesn't cover any preventative surgery so because i lost my health insurance i have to wait to get my aorta wrapped. My father had his wrapped when they thought he had Erndheim's and he's still going strong in his 70s.

[@vernasgirl]

i have the 3rd kind. LDS3 with osteoarthritis. i do not have the facial features. i have the long fingers, bruising, allergies, velet skin, and man of the other hallmarks. i've had my entire aorta replaced and repaired. 3 surgeries in 3 years and the very first one was valve sparing root 13 years. ive also have a spontaneous pnemo. It is my knowledge that there a 4 types LDS in all.

[@BvSriraj-kw3ux]

What is your age?

[@shushi8521]

I have it to. It is very sad that I know I'll probably won't live up to my 30s. Yes my mom and me are petty flexible and have thin fingers I cant do situps or I'll probably bust a artary or something. I am pretty tall in size and lanky sometimes dockers mistake of if I have marfins (if that's how you spell it).

[@TheMarfanFoundation]

Hi. Where do you live? Are you being monitored? You can certainly live past your 30s! Please reach out to us via marfan.org/ask.

[@mariahensch8163]

you dont have to have all of those clear distinctive features at all. you can have aneurysms forming all over the body and be tested genetically and have the Smad3 gene.....problem is we try to put everyone in a box of features and by doing this we miss a lot of other people who have other characteristics of loeys deitz which is primarily a connective tissue disorder which runs in our family without all the other outward appearances

[@veelalynne]

My daughter and husband has type 4. Sometimes it's pretty overwhelming.

[@nicoleramos5374]

veela lynne my daughter Just got diagnosed with lds type 4 also. what should I expect? p.s. my husband & I will be getting tested soon.

[@veelalynne]

Good news is that they found a protein that causes the problem and a drug that stops production of the protein. Ask your doctor to research Losartin.
Otherwise they can only treat the symptoms. My husband did well until his mid-teens. Then he started having knee and joint injuries. My daughter started a bit earlier, about age nine. She got knee dislocations. They are just not to athletic. But we hope the Losartin will help.

[@ParadeTheGospel]

@@veelalynne so you mean losartan, a drug for high blood pressure?

[@stinevik4528]

remember that there is two types of loeys dietz syndrome, type 1 and type 2.
i have type 2, type 1 is where you get the visible features like the head and the wide set eyes,

[@KayleeP56]

There is only one type of the syndrome

[@stinevik4528]

Well in norway there is loeys Dietz type 1 and 2. Google it ore email Dr.Loeys :p type 2 like me is alot like marfan. We dont have that many visible signs other than the thin velvet skin and Long limbs.

[@KayleeP56]

Sorry I ment there are 3 kinds my brother was playing with my ipad

[@stinevik4528]

no problemo :)

[@anon9801]

My father, two sisters and I all have type 2. We have the velvety skin, long limbs and we bruise easily. We also have chest indentations - but none of the other outward physical indicators that typify type 1.