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  2. Loeys Dietz syndrome
  3. Advice
I was diagnosed Marfan first. Later, DNA confirmed LDS.
by Janell C.
To finally get a diagnoze made it all come clear
by Susanne
Speak Polish and English
by Alice
a positive attitude
by Deborah
Great surgeon
by Tracia
My daughter was diagnosed at 10
by Kware
Daith Piercing (migraines)
by Naomi
Special authorization for my Tylenol 4 prescription, which I take for pain.
by Rachelina
My family's support
by Emma
Rest when I need it and don't over exert myself, regardless of others opinions.
by Lexi
Proper diagnosis for proper followup and treatment
by Derek
Proper diagnosis for proper followup and treatment
by Derek
Losartan
by Jbertz0223
My husband always looks after me that I don’t become sicker that I am now.
by Sonja
Just knowing my diagnosis has helped put things in perspective.
by Jo Lyn
After 2 open heart surgeries in February of 2015, I still struggle 'feeling better'.
by Janell C.
My brother -Together we try to survive
by Susanne
Starting a non-profit organization to honor my children Katherine and Ryan who we lost to Loeys-Dietz Syndrome
by Deborah
Great family
by Tracia
My daughter is 22 has undergone over 80 surgery
by Kware
Loeys Dietz Syndrome closed support group on Facebook..
by Rachelina
Regular massages
by Emma
Listen to my body. If I feel something is really wrong I tell someone.
by Lexi
Chest scans for pectus deformity led to finding a severe diaphragmatic eventration/hernia
by Derek
Chest scans for pectus deformity led to finding a severe diaphragmatic eventration/hernia
by Derek
Finding excellent doctors
by Jbertz0223
My family fights this with me.
by Sonja
My husband! He is with me through surgery and pain.
by Jo Lyn
Im thankful to Stanford University Medical Center, Dr. Liang, Dr. Fischbien, and each of their teams for saving my life.
by Janell C.
Making a difference throuh supporting medical research into Loeys-Dietz Syndrome and Aortic Dissections
by Deborah
Not giving up
by Tracia
Keeping several medical journals, to keep track of all of my diagnosed comorbidities, symptoms, characteristics, medications, and taking it with to my doctor's appointments.
by Rachelina
Having access to the right disability aid
by Emma
Having a knowledgeable doctor, or at the very least one that will listen and try to understand.
by Lexi
Quitting the workforce and filing for disability has improved my quality of life ten fold
by Derek
Quitting the workforce and filing for disability has improved my quality of life ten fold
by Derek
A good support system
by Jbertz0223
I allways had this fear of dying young.
by Sonja
I'm newly diagnosed so I waiting to learn Thing #3
by Jo Lyn