Women Carrier Symptoms!
Hope4l8 days ago
Hi I'm 42 and I am a carrier of ALD. I'm starting to experience tingling and numbness in my fingers and toes. I also have notice unusual pa...
New in fight with ALD
MonaStoica20 days ago
My name is Ramona from Romania,my son was diagnosed recently with X-ALD ,he has 8 years old,we didnt knew anything about thi...
New to health unlocked
Leelee85a month ago
Hi, my name is Alisha. I’m a 33 year old carrier of ALD. My family found out about this disease when my brother Gary(Pine_Knot on here) star...
Symptons as an Adult Woman!
Hope4la month ago
Hello everyone. Not only am I going threw my son having ALD, I am now start to experience some of the effects of the disease. I am a 42 year...
two kids diagnosed with ALD
aadilmadarveeta month ago
I have two son's who have been diagnosed with ALD.
One of them is 8 year old and the other is 3 year old.
Both don't show any physical symptom...
trkepplea month ago
At 52, it’s challenging to deal with ALD.
1 Reply1 Like
ALD Life Impact Survey
ALD-Life4 months ago
Have you completed the ALD Life Impact Survey yet? Results will help us to improve the support we provide, as well as attracting funding to ...
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How to get Lorenzo's oil?
Hope4l6 months ago
Hello everyone I have 10 year son who is suffering with ALD, and I'm in Virginia. I've been told that Lorenzo's Oil doesn't work. But me as ...
PawelK9 months ago
We live with a wife in Scotland, but we have families in Poland.
My wife has a brother and sister. A few months ago her brother wa...
Newbies needing some advice 😊
Jodieandreuben10 months ago
Hi everyone. I’m new to this site (not new to ald, unfortunately my son Reuben was diagnosed about 7 years ago, he’s 10 now, with his diagno...
Flu 2108 spring
nikolahn10 months ago
Three weeks flu. One week out of work. Three weeks with crutches. Not violent but persistent.
Next week hopefully back to fitnessing.
My son has ALD & has been diagnosed as severely anemic, are the 2 related ? He is waiting for an X-ray to see if that shows anything
kimmy10 months ago
Anemic low in iron
My Yearly ALD status check passed good!
nikolahna year ago
One year passed after my last ALD status check and meeting with my neurolog.
Legs periferal nervs conductivity status unchanged, the same si...
Jamesm1978a year ago
Hi, I’m new to ALD as my son has recently been diagnosed. He’s 8. We’re thinking of taking him on a dream holiday, so if there are any exper...
18 year old Son Diagnosed with ALD
ballmla year ago
My son was just recently diagnosed with ALD and will be getting a Bone Marrow transplant soon. We are all very scared and lost right now and...
ALD Parents Teleconference Support
SongStreama year ago
I received notification from ALD Connect about an upcoming teleconference for all ALD parents. Although the community is based in the Unite...
bluejadedwho2 years ago
Does anyone know how to get a hold of the member Robsupernova? He had some amazing theories years ago which I now finally understand through...
New baclofen pump
Pugman372 years ago
So last Tuesday I got a baclofen pump implanted. I would like to know if anyone has had my experiences. I currently can only stand a little ...
drugs for 8 years old boy suffering ALD
zane_a2 years ago
My son a year ago was diagnosed with ALD. The disease progressed rapidly, now he already is in a vegetative state. He suffers from sei...
Pine_Knot2 years ago
Hello. Again my name is Gary. The only movement in my legs are spasms. The strength in my arms has decreased greatly. I can still move them ...
An ALD carrier in Vietnam
tramynguyen122 years ago
Hi, I am new here. I am a ALD carrier from Hanoi Viet Nam. My brother died by ALD in 2002 at 11 and I have a male cousin died by ALD also fr...
Should daughters be tested....
Hello! 8 months ago my son was diagnosed with ALD. The disease progressed rapidly and now my son has all ALD symptoms. I have carried out ge...
Hello - from Michael Conway
MichaelConway2 years ago
Hello. I am Michael Conway, almost 50 years old, from Renfrew (near Glasgow Airport) in Scotland.
I have been seeing a neurologist for about ...
PumpkinsMa2 years ago
My cousin was dignosed with ALD a year ago. My two sons tested (aged 4 and 6) and they are negative. I didn't get tested because I was con...
HI, please help me figure out my symptoms
alissafei3 years ago
I'm a 17 year old female. i've been feeling extremely nauseous, drowsy and had a loss of appetite. My nausea kicks in almost anytime of the ...
DallasPitman3 years ago
I have a 4 month old son, in which I never thought I'd be able to seeing as I am a carrier of ALD. I lost my Dad to AMN in 2007 which was ha...
Pine_Knot3 years ago
Hello everyone. My name is Gary. I'm new to this site.
Liver transplant in pakistan
phcc1233 years ago
Pak Health Care is the well known center in Pakistan. our mission is to give facility to patients and their atten...
DVLA Post BMT
Hopeforthefuture3 years ago
Son applying for provisional licence. He is 5 yrs post BMT. He is extremely well and only medication is for Addison's. He doesn't have to ...
PRANARR23 years ago
My wife has loculated hemorrhagic ascitis and is suffering from ca stomach- stage iv. Taping is now difficult and not more than 100ml of flu...
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