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