Standards of Care as defined by UMN doctors
fightald4 days ago
Bloodwork to check for adrenal insufficiency should be done at 4 months and repeated every six to detect AI early. It is easily treated with...
ALD prenatal genetic testing for moms?
TwoInsomnias4 days ago
Does anyone know of any efforts being made to include ALD in the prenatal genetic testing done for moms, which is typically done in the firs...
ULF Meeting in June
fightald5 days ago
I wanted to give all you parents a heads up that the United Leukodystrophy Foundation will be having their annual conference in Eaglewood, I...
Be the first to reply1 Like
TheBombBoyMom5 days ago
It was recently determined time to begin daily oral steroids for my son. We have been prescribed hydrocortisone, but it only comes in a pil...
How does new born screening of ALD help?
aadilmadarveet10 days ago
Could anyone share some info on how does the new born screening help in treating the child.
Identify the carrier.
How to diagnose if I am the carrier or my wife is. The doctors just assume that it's my wife. The reason why this is important is because I ...
Father of two son's diagnosed with ALD
I came here through aldconnect.org.
I have two son's. Both of them are diagnosed with ALD. I came here looking for other people's experience...
Q tratamiento m ayudaría para la ALD
Tysha136a month ago
Necesito con urgencia tratamiento e información sobre la enfermedad
Understanding My Childs Health
__Kyrie0619__4 months ago
My name is Jessica. My newborn Child was diagnosed with X-linked Adrenoleukodystrophy back in June 2018. I was devastated and heart bro...
More states adding ALD newborn screening update.
fightald7 months ago
I am happy to share that North Carolina is following several other states by screening all diseases that have been added to the RUSP (Recomm...
When you were first (and or your child) diagnosed with ALD, what was your doctor’s initial advice?
KerriDeNies8 months ago
Here is my story of how I had the news broken to me...let us know your story to help others
My baby’s pediatrician/ our family doctor’s off...
Hello Everyone! I am a ALD Mom ❤️
Hello Everyone! My name is Kerri and my son, Gregory was diagnosed with ALD in thanks to California adding the test to their newborn screen...
Be the first to reply2 Likes
Welcome to our forum! Tell us how we can help support you and your family.
fightald8 months ago
As you join this group please give a short synopsis of why you are here, i.e. how you learned about us, what is your biggest concern, how ca...
Be the first to reply
Mom of 2 ALD boys
Jen199 months ago
I am associated with Janis and know many speak very highly of her and her knowledge. Knowledge is power, I couldn't agree more. Many know my...
Be the first to reply3 Likes
MaddieHU9 months ago
Why not leave a short comment below and introduce yourselves. Give as much or as little information as you like. Feel free to ask your own q...
matt9 months ago
If you’ve just arrived as a Pioneer member this is where it all begins. HealthUnlocked is a social network for health advocates like yoursel...
Who we are!
fightald9 months ago
This forum is moderated by Janis Sherwood and Elisa Seeger who worked hard to get newborn screening implemented so that no family has to exp...
Start a Community