Research and Treatment | Loeys-Dietz Syndrome
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- เผยแพร่เมื่อ 8 ก.ย. 2024
- Harry "Hal" Dietz, M.D., director of the Smilow Center for Marfan Syndrome, discusses the progress and promise of treatment and research on Loeys-Dietz syndrome, with support from the Kasper family to keep research moving forward. More information is available through the Johns Hopkins McKusick-Nathans Institute of Genetic Medicine: www.hopkinsmed...
This research does display promising results! Best of luck to the research team!👍🏻
It’s weird finding out you have an extremely rare syndrome at only age 11. Our whole family had this but just recently found out.
I was also diagnosed with this at 11 and so was my mum. Am 14 now and still have a very good hart.
@@dfbbp7721 wow are you me?
Except 2 1/2 years ahead.
@@NinEris maybe 😂
Yay im not alone me and my family also have it but my father does not its not that bad but whats annoying is that I can't let my heart rate go to 120 or over
Hi I live In Tasmania Australia, My son was diagnosed with Loeys-Dietz Syndrome last year not long before his 8th birthday, I am struggling to find accurate information where am I best to look??
Best of luck with current research I look forward to hearing results
www.loeysdietz.org/en/
dimity mitchell what type do he have?
Dr. Howard levy in greenspring station (Timonium MD) is a geneticist who specializes in this field
410-583-2774
He saved my life back in 2009
I have lds and had an aortic root replacement graft
Exactly 11 years ago
My life is better
Moose Stubbings my son is being genetic tested for loey dietz now . He has an aortic root aneurysm. I hate the unknown
Não falo inglês, queria tanto entender o que ele fala
I really need help. I have numerous symptoms and I went to a geneticist and my insurance wouldn't pay for the full testing and only could do one test called HCDT or something and or came back uncertain varies I think for EDS asks LDS SMAD3. I do have a copy. But absolutely nothing else has been done except my NEUROLOGIST giving me a CT angiogram from the neck up because I have had a stroke before the age of 45. I am lost and need 11+v surgeries and I'm 49 yo. I'm scared. 😭 I live in Florida and don't have money to travel out of state or to pay for the full genetic testing. I just need guidance and someone that cares. I'm so sorry to anyone who is dealing with this. I need to donate my body to science because something is NOT right. My first scoliosis surgery was when I was 12 yo and 3 months in a children's hospital. I'm miserable to say the least. I want to live and watch my kids and grandkids grow. Good luck to everyone.
Hi Kimberly, thank you for reaching out to us. We’re very sorry to hear about what you’re going through. Unfortunately, because each person’s medical situation is different, we are unable to provide treatment recommendations or second opinions via this form of communication.If you would like to request an appointment at one of our hospitals, please call 888-872-1408. Our specially trained medical concierges can arrange consultations or treatment plans with the most appropriate specialists. Johns Hopkins USA can also provide language interpretation, financial counseling, assistance with travel arrangements and anything else to help make Johns Hopkins feel as close to home as possible.