My father's side of the family had ALD, he was the only boy who did not have it. He had to watch his brothers degenerate with no treatment or cure, not knowing if the same would happen to him. Amazing video, and thank you so much for educating people and raising awareness about this disease. Thank you.
That fucking disease is worth than death...(while you are "alive") people with this disease should have the option to get euthanasia before they get demented.
That was a great explanation! I have the AMN version, and my younger brother passed in 2010 from the cerebral version. Devastating disease. I wish they'd hurry up with the gene therapy!
I have ald.. I fear this is what my family will have to watch me go through. Thank god medical world has come a long way.. I am in a study trying to help with AMN..
@@BillyMacsAdventures how are you doing? I have seen people healed from ald after receiving a bone marrow transplant... My father died from this disease btw
I've never commented on a video before, but may I say that this was a very well done video. Explanations were very thorough while still making sense. Also being a visual learner, the drawings were very helpful! Thank you!
I'm in the medical school and this video help a lot to understando better this disease. Thanks a lot! Keep going withs this beautiful work, information should be for all.
Awesome video on ALD. Great tool to use for family members and friends to help educate on how disease exists, as well as in helping pass Newborn Screening in the U.S.
Was diagnosed a few years ago. Had trouble 2alking at age 45 now 62. Used a cane for years and did wall walk8ng. Then to a walker now in a wheelchair. Seems like some symptoms came on overnight. One day I could walk and the next had a lot of trouble. My legs are gone can't stand or get into my chair or on the bed my son helps. No pa8n and my arms and eyes are fine. My other son told me about age 27 he's now 34 he thinks he had what I have. He had trouble walking couldn't play basketball anymore. He went to a doc who recommended genetic testing found we both have it. I'd like to improve my legs with working out but think it's a waste of time.
I feel very blessed, for I have Adrenal Insufficiency, and it seems to be the least devastating of them all. I have a question though, I had my BM transplant when i was around 2 or 3 in 2007, and ever since then, I have had an abnormal hair quality. It looks like it is very thin, and or looks like I have way under the average "amount" of hair. I have enough to cover my head, but it looks like just several strands spread out across my scalp. I recieve some bullying over it, so I would like to know why it might be like this and if I can fix it. Thank you.
Fallen Captain I would wonder how your thyroid is functioning. Low thyroid hormone causes all kinds of symptoms including thin, fine hair, dry skin, etc. I take Urfa Thyroid and it works way better than levo thyroxine (which is fake T4 hormone). Try taking a kelp supplement first. Most people today are very low in iodine. This is just my experience. Cheers.
I have ALD Cerebral, Addisons, ect., When I tried to explain this x linked trait to my mother and her daughter (who has three boys), I was accused of blaming my mother for my illness and banished from the family. That was 10 years ago, I wonder how they are.
Hello. Thank you for sharing your story. I am really sorry to hear about your family, but thankful that you are a survivor. My brother is 42 years old and was recently diagnosed with this, and it has really devastated my mom and I. In your comment, you said 10 years, so I want to use that for optimism, but it is so hard to be optimistic after searching for information online about this disorder. There is so much info, but much of it is unclear about the prognosis for adults, and it is so hard to find reliable information. My brother's only hope for survival is to do the bone marrow transplant, but there is little information about it or its success for adults with this disease, or I am just having a hard time finding it. If you are willing to, please share if you or anyone you know with this disorder has successfully done the transplant and how you or they are doing now. Please continue to be well and continue sharing your story as inspiration for others.
@@jana.7349 Hi Janine. Thanks for your kind reply. If it helps with your optimism, I was only guessing the 10 years, but I just found my diagnosing MRI scan and it was taken on Aug 9th, 2005. So I have officially had ALD/AMN Cerebral now for over 13 years. I was given no information, and In fact, only found out I had it by ?luck? when I obtained and read my own medical records. I have been offered and received no treatment for ALD (I do take the regular meds for my Addison's) and everything I know, which is little, I found online at places like www.stopald.org which you probably already now. I think the prognosis is unclear because of just that... the prognosis is unclear. Every case is different. I just keep going, day after day. Since I am only 'faking my illness', and since it is 'all in my head', I have no one, no family, so If it has to be done, I have to do it. If I don't do it, it doesn't get done. Good for you and Mom for sharing your brothers devastation, it will lighten his load of burden, but don't let it destroy you , Consider books such as sick and tired of being sick and tired and books on living with chronic illness that offer ways to make life easier. I only own the bare minimum of 'things' because i cant take care of" things" , as they say, i have nothing in my home that isnt useful, or beautiful. OH and don;t let anyone give you a lifespan date, just live another day. On the good days, live that day, on the bad days, curl up in a ball, press your head against the wall, cry, and live that day, and then live another day. Watch the boys in your family, all the boys. watch the baby boys, there is help for them. Sorry for rambling.... Have the best day you can :)
@@blackbeard8985 Hey! Thank you for getting back to me so quickly. Wow...13 years ago! It is hard to find information now so I know it was impossible to get info 13 years ago. I am glad you are still here and continue to be strong. That really is good news. Thank you for your recommendations as well. I need all the help I can find. Most of all, thank you so much for your positive words!
@@blackbeard8985 Hello again! I had reached out to someone else too for advice, and he shared the following website to find more people to talk to or at least for support. So I just wanted to share it with you in case you had not heard of it. healthunlocked.com/amneasier
My brother was diagnosed with ALD when he was 29. Lived a perfectly normal life up until then with no symptoms whatsoever. He passed away December 2016 at age 32. Sorry but there's no hope with this disease. RIP my brother.
jayjayjayh There is hope! I’m very sorry for your loss, I really am. There are two treatments. Lorenzo’s oil only works when you use it before the symptoms kick in, and stem cell transplantation has a 40% mortality. It is rare to cure, but there is always hope!
Hello, I currently have the disease as well and am thankfully a survivor. Well let me explain this to you. I'm assuming you're a man and not a woman. So you have X and Y chromosomes in the cells you will be transmitting to your children, where the X chromosome is hit with ALD mutation. If you give your child the X chromosome, then she'll be a girl, and she'll be a carrier of the disease and could even probably transmit it to her children. However, if you give your child the Y chromosome, then he'll be a boy, with no ALD mutation in his cells, again assuming that the mother does not carry the disease in her cells. You should always remember, this is not a choice for you to make, so whatever happens you should be thankful. Hope this helped you my friend. Stay strong
@@andrewmetni3643 Hello. Thank you for sharing your story...that you are a survivor. And thank God that you are a survivor. My brother is 42 years old and was recently diagnosed with this, and it has really devastated my mom and I. There is so much information online, but much of it is unclear about the prognosis for adults, and it is so hard to find reliable information. My brother's only hope for survival is to do the bone marrow transplant. But there is such little information on it being done on adults with this disease, or I am just having a hard time finding it. If you are willing to, please share if you or anyone you know with this disorder has successfully done the transplant and how you or they are doing now. Please continue to be well.
Janine Ashby Hello. Thank you for your kind words. First, i am really sorry to hear about your brother. Him and I have the same case of AMN (which is the adult version of ALD) and it is true that there’s not a lot of info available concerning this disease. To be honest, I don’t know anyone who had a bone marrow transplant, but what I can tell you is that it is not a safe way. It has very high risks of complications. What I know is that it has more or less 50% rate of success (not very sure of the number, but it has a low rate of success) Stay strong, and live day by day. there are hopes of new gene therapies in the coming years. If they are to our luck, we could benefit from those therapies one day. I wish your brother the best if u need any more questions, this is my email: andrewmetni@gmail.com May God protect you and your family
It’s not effective. It worked on Lorenzo to slow the progression of the disease but works in only a few patients. Science daily has a great article on it
Joanne Stealey not saying it’s not but for most it’s very ineffective it’s not a treatment unless it’s verified by your doctor that it will work with your physiology
It sure worked on the little boys in that movie.i think they dont want people to know about this movie so science lies because of big pharma would not want them to go into remission due to a diet cause they wont make money off their desease.i think this is a lie and I bet it does work
