18 year old Son Diagnosed with ALD
ballml4 months 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
SongStream5 months ago
I received notification from ALD Connect about an upcoming teleconference for all ALD parents. Although the community is based in the Unite...
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bluejadedwho5 months 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
Pugman377 months 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_a7 months 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_Knot7 months 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
tramynguyen129 months 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_aa year 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
MichaelConwaya year 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 ...
PumpkinsMaa year 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
alissafeia year 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
phcc1232 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
Hopeforthefuture2 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 ...
PRANARR22 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.
KazzyALD2 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??
SusanBr2 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...
Abidatih2 years ago
Am Abidatih from uganda
Declan2 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...
My 9 year old son scored 13.5 and went with transplant
ALDLALO3 years ago
My son scored a high 13.5 and our doctor took an aggressive approach. Transplant was good, but now we are having trouble with by polar beha...
2 Replies1 Like
Aggressive behavior after transplant
Hello to all, first of all i know how overwhelming this takes a toll on you and your family. My son was discharged from hospital after the t...
1 Reply1 Like
Hopeforthefuture3 years ago
My teenage son is now almost 4 yrs post BMT for ALD. He continues to be well and very active with stable MRI's, he copes very well with his ...
These two doctors saved my sons life
Zachary53 years ago
orchard MD, Paul J.firstname.lastname@example.org Pediatric BMT
Tolar, Jakubtolar003@umn.edu612-625-2912 Pediatric BMT
I recommend contacting th...
Important news regarding having children without the ALD gene
MineshGokal3 years ago
In the past, there has been some doubt as to whether or not pre-implantation genetic diagnosis (PGD) will test both male and female embryos ...
Is there any aspect of your condition where you would support?
Whether you are interested in dieting, exercises, or a particular clinical trial, please share them below. We will then start a discussion o...
Claiming Personal Independence Payment
Have you been called for a Personal Independence Payment (PIP) review? Have you been taken off Disability Living Allowance (DLA)? A member r...
Clinical Trials in the EU
Sara3 years ago
Do you think more needs to be done at EU level when it comes to clinical trials across Europe.
Please feel free to read this article and sha...
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