ALD Life Impact Survey
ALD-Lifea month 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?
Hope4l3 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 ...
PawelK6 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 😊
Jodieandreuben7 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
nikolahn7 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
kimmy7 months ago
Anemic low in iron
My Yearly ALD status check passed good!
nikolahn8 months ago
One year passed after my last ALD status check and meeting with my neurolog.
Legs periferal nervs conductivity status unchanged, the same si...
Jamesm19789 months 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...
bluejadedwhoa year 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
Pugman37a year 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_aa year 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_Knota year 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....
zane_a2 years ago
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
alissafei2 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 ...
DallasPitman2 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_Knot2 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...
ALD in women.
KazzyALD3 years ago
Hi everyone, I was told a few years ago, that I have mild nerve damage in my legs, due to ALD. I already knew I was a carrier. I also have R...
I was just wondering if anyone else was having trouble getting hold of Lorenzo's Oil? My son has been without it for just over a month now. ...
Relapse on AMN??
SusanBr3 years ago
I am 64 yrs female with AMN diagnosed in 2012 progressing slowly albeit a lot of falls a broken bones set me back. Had a fall a month ago a ...
pakistan liver transplant
Provide solutions for the patients of liver transplant in Pakistan. Complete information and consultation about liver transplant surgery and...
Abidatih3 years ago
Am Abidatih from uganda
Hidden3 years ago
My nephew is waiting on a brain scan to see how/if his brain is being affected. He lost one cousin at 39. The other cousin seems to be more...
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