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Adrenomyeloneuropathy

What is Adrenomyeloneuropathy ?

Adrenomyeloneuropathy (AMN) is an inherited metabolic disorder characterized by the degeneration of the adrenal gland and the loss of fatty covering on brain nerves. It is a form of X-linked adrenoleukodystrophy. AMN patients typically experience symptoms including spinal cord dysfunction, weakness, weight loss, skin changes, vomiting, and coma. Brain function may also be affected, depending on the type of AMN.

 

Adrenomyeloneuropathy (AMN) is an inherited metabolic disorder characterized by the degeneration of the adrenal gland and the loss of fatty covering on brain nerves. It is a form of X-linked adrenoleukodystrophy. AMN patients typically experience symptoms including spinal cord dysfunction, weakness, weight loss, skin changes, vomiting, and coma. Brain function may also be affected, depending on the type of AMN.

Acknowledgement of Adrenomyeloneuropathy has not been added yet.

Adrenomyeloneuropathy is a rare disorder, affecting less than 1 in 40,000 people. It is a X-linked condition, and occurs more frequently in males. The average age range for disease and symptom onset is between 20 and 40 years. There is no known racial predilection for Adrenomyeloneuropathy.

Synonyms for Adrenomyeloneuropathy has not been added yet.

Adrenomyeloneuropathy is caused by a mutation in the ABCD1 gene. This gene is responsible for the production of the adrenoleukodystrophy protein (ALDP) which transports long- chain fatty acid (VLCFAs). In a mutated ABCD1 gene, the insufficient amount of ALDP slows the transportation and breakdown of VLCFAs, and instead they accumulate within the body.

There are a number of symptoms that affect people with Adrenomyeloneuropathy. The average age at which symptoms first appear is 28, but onset can occur anywhere from the second to the fifth decades of life.

Name Description
Weakness and Stiffness Gradual, progressive weakness and stiffness of the legs
Weight Loss Weight Loss
Excessive Muscle Tone Excessive Muscle Tone
Difficulty Walking Difficulty Walking
Visual Defects Visual Defects
Difficulty in Articulating Words Difficulty in Articulating Words
Behavioral Changes Behavioral Changes
Adrenal Insufficiency Adrenal Insufficiency
Seizures Seizures
Impotence Impotence
Bladder Dysfunction Bladder Dysfunction
Mild Peripheral Neuropathy Mild Peripheral Neuropathy
Nausea Nausea
Ataxia Loss of the ability to coordinate muscle movement
Muscular atrophy Atrophy of the limb muscles occur over a period of time
Lower back pain Lower back pain

AMN is usually diagnosed in, but not limited to, young men who display weakness and numbness of the limbs and urination or defecation problems. Women may be asymptomatic or may, like men, have problems with mobility and bladder and bowel control. For doctors to establish proper diagnosis, blood tests must be taken to examine if elevated levels of serum long chain fatty acid are present. In addition, MRI examination can reveal white matter abnormalities and neuroimaging findings of this disease are very similar to findings of Multiple Sclerosis.

Diagnostic tests of Adrenomyeloneuropathy has not been added yet

Currently there is no cure for AMN; however, there are some dietary treatments that patients are using to help alleviate some of the symptoms of the disease. Patients also sometimes take a treatment consisting of a mixture of glycerol trioleate and glycerol trierucate, more commonly referred to as Lorenzo's Oil. This treatment is considered experimental by the FDA and can cost approximately $440 per month. Because of its experimental status, most insurance companies will not cover this treatment. One biotechnology company working to develop a treatment for AMN is ReceptoPharm, Inc., a subsidiary of Nutra Pharma Corporation. This treatment just completed its Phase IIb/IIIa clinical trial in London, England.

There are various treatments available for Adrenomyeloneuropathy patients that help combat symptoms. Replacement therapy and adrenal steroids control adrenal insufficiency and balance hormone levels, which ultimately improves the patient’s quality of life. Additionally, patients have the option of dietary manipulation with Lorenzo Oil to reduce VLCFA levels. Patients with early cerebral involvement may undergo a bone marrow (hematopoietic stem cell) transplantation.

Prognosis varies from patient to patient. Some have only mild symptoms; others are wheelchair bound and suffer impotence as well as loss of bladder and bowel control. As noted above, those with cerebral involvement are more seriously affected and eventually die from the condition.

Name Description
roy2good Stay indoors and away from crowds especially during cold and flu seasons. Besides that, get things right with God, try to understand why you are 'lucky' to have this conditon. Enjoy life for as long as you have it! Don't complain people don't want to hear complaints! When things seem all out of control and you are at your worst, go to bed and try again the next day! Keep positive mentally and verbally!
Arod I've been living with this condition since 2001. Keep positive, stays as active as you can, & just enjoy live with family and friends.
MissSheryl I participated in a study of Lorenzo's Oil at Hopkins Kennedy Kreiger Center in Baltimore. The purpose was to determine if Lorenzo's Oil had any benefit for women with AMN. The study was terminated after 2 years when no benefit was found in any of the study particpants. Further more, some participants displayed negative reations. For AMN, Lorenzo's Oil appears to be a dead end, at least for women with AMN. Sheryl
References of Adrenomyeloneuropathy has not been added yet.
HelpAround Specialty Patient User Testing Created by krystalqle
Last updated 10 Jun 2020, 04:44 PM

Posted by krystalqle
10 Jun 2020, 04:44 PM

Hi Everyone! My name is Krystal, and I am part of HelpAround, a digital health startup that's building a mobile platform for specialty patients. The app is designed to help chronic/rare disease patients and their support systems manage their specialty treatments by providing them with any necessary logistical, educational and community support. We're looking for patients who are willing to give us feedback on our prototype(s), so that we can improve our user experience.

If you're interested, the UX testing details are below:

  • Goal: Understand which app feature(s) are/are not user-friendly
  • User Demographic: Any patient who is currently taking (or have taken) specialty meds, now or in the past
  • Duration: 1 hour (each session will consist of a series of defined tasks)
  • Platform: Zoom

We would love to hear your opinions and see how we can help improve the patient journey for those with rare diseases. If you are at all interested, please feel free to email me at krystalle@helparound.cc, or respond below. Thank you so much! smiley

ALD Connect's 2017 Annual Meeting & Patient Learning Academy Created by bsc78
Last updated 21 Sep 2017, 01:37 PM

Posted by bsc78
21 Sep 2017, 01:37 PM

This year's conference will be held in Bethesda, MD on Nov 17-18, 2017. As a conference focused solely on ALD, this is a great opportunity to meet others affected by ALD, learn about the latest clinical trials, and get some of your questions answered by the experts in the field. Learn more and register: http://events.r20.constantcontact.com/register/event?oeidk=a07eee9wfhrb72d3 b6f&llr=e8ntkipab

http://www.facebook.com/aldconnect/

AMN Podcast Panel Discussion - Wednesday June 14 10am EST Created by icrispe
Last updated 21 Jun 2017, 02:08 AM

Posted by icrispe
21 Jun 2017, 02:08 AM

Hi Everyone,

Last week's Adrenomyeloneuropathy (AMN) podcast is now available to listen to on the Rare Genomics/RareShare iTunes Podcast Channel or on Kiwi6

Thanks so much to everyone who tuned in and submitted questions!

All the best,

Imogen

Posted by icrispe
7 Jun 2017, 09:41 PM

Hi Everyone,

My name is Imogen and I'm a volunteer with RareShare. I am hosting a podcast, "Ask the Experts Podcast Series-Adrenomyeloneuropathy Syndrome" next Wednesday June 14 at 10am EST. You can listen live, or listen to the recording afterwards. Find out details, register, and submit questions here: https://rareshare.org/notifications/rgi-rareshare-ask-the-experts-podcast-series-adrenomyeloneuropathy-syndrome

Thanks!

ALD Connect's Breakout Sessions Created by bsc78
Last updated 16 Mar 2017, 06:06 PM

Posted by bsc78
16 Mar 2017, 06:06 PM

Just thought I'd pass this along.  ALD Connect periodically holds conference calls so members of the ALD community can talk to one another about dealing with the disease, create a support network, and develop a stronger community. Please share with anyone who you think might be interested.

There are three scheduled Breakout Sessions designed to cover a number of interests: Men with AMN, Women with AMN, and Parents of ALD Newborns. Learn more about the calls and register through its Facebook page: https://www.facebook.com/pg/aldconnect/events/?ref=page_internal

Can't stand Created by Anthony90
Last updated 16 Jan 2017, 12:27 AM

Posted by Anthony90
16 Jan 2017, 12:27 AM

Yes I use a wheelchair all of the time and transfer. I was worry I am maturing to be fully disabled ):

Posted by lowrider38
15 Jan 2017, 11:18 PM

Yeah the cold makes me much stiffer and therefore it's harder to walk. And our disease is progressive so each winter it may become a little more challenging to get around. What I have found to be most beneficial is daily exercise. The less I move the worst I get, exercise helps me maintain my mobility for sure. Stay strong Anthony.

Posted by Anthony90
15 Jan 2017, 06:13 PM

Yes, I could stand the winters prior. Although, I may have progressed over last year. Thanks guys!

View Full Thread (3 more posts)
Burning Feet Created by Unsworthj
Last updated 25 Dec 2016, 05:22 PM

Posted by Unsworthj
25 Dec 2016, 05:22 PM

That helps! I did not give the gabapentin enough time to work. I quit after just a few days. I had two different docs tell me that if you quit gabapentin, you have to wean yourself off. Thanks Again! John

Posted by tunesmith
24 Dec 2016, 07:17 PM

Hi John, Just so you know the nighttime dose helped me curb the pain. My pain is not too intense during the day enough for me to take Gabapentin because I already have fatigue and I do not want to add to it. I copied this from a Google search: "It takes about a week for gabapentin to start reducing nerve pain, and two weeks for it to take full effect. Source: Gabapentin for the Symptomatic Treatment of Painful Neuropathy in Patients With Diabetes Mellitus A Randomized Controlled Trial, Backonja et al. ( 1998).Nov 5, 2016" Let us know how this works out. And you're right about doctors. I learned everything from these communities and if I help others, then I am also giving back to our community. Thanks John, and Merry Christmas to you and yours, too.

Posted by Unsworthj
24 Dec 2016, 07:02 PM

Hi again Tunesmith! You have been more help to me that my doc! I kinda figured that it took gabapentin several days to start working. I didn't give it enough time. I was taking 300 mg I think? I really like the idea of only taking one pill at bedtime and not several times a day. My doc gave me "tizanidine 4mg". I only took it at bedtime and it didn't work. The nurse then told me to take it 3X a day and it helps some. I think I'll ask him about giving gabapentin another try. I like the idea of taking a muscle relaxer to help me go to sleep! Anyway, thanks for all your help. I wish I could return the favor. Thanks again, Merry Christmas to you & yours, John

View Full Thread (8 more posts)
AMN Specialists near Ottawa Ontario Created by Aylott
Last updated 21 Dec 2016, 05:16 AM

Posted by Aylott
21 Dec 2016, 05:16 AM

I have tried desperately four almost five years now to get a doctor to refer me to the appropriate specialists and I'm still being shuffled from G.P to clinic doctors and I'm looking for inspiration. Wonderful physicians and knowledge base in Alberta and looking to replace it in Ontario, as close as possible to Cornwall,On. Guess that would infer Ottawa or Toronto, however, the Sunnybrook in Toronto has been a complete waste of time. I'm wondering if anyone has good news about an "AMN specialist" locally to us. This is for my husband. He was diagnosed at 45 and is now 50 but had undiagnosed symptoms for years before that. He has both cerebral and spinal involvement and his symptoms are all beginning to progress.

Stem Cell Therapy Created by alwilner
Last updated 21 Dec 2016, 02:08 AM

Posted by alwilner
21 Dec 2016, 02:08 AM

Has anyone with AMN ever had stem cell therapy? If so, did it work? I would appreciate any info. I am a 63 year old man with AMN that includes significant neuropathy in my legs. Thank you.

Burning Feet Created by Unsworthj
Last updated 31 Oct 2016, 03:47 AM

Posted by tunesmith
31 Oct 2016, 03:47 AM

Hi Shelly, I am also a member of inspire.com and there is a discussion thread Women Carriers with Pain where you will find support: https://www.inspire.com/groups/united-leukodystrophy-foundation/discussion/women-carriers-with-pain/ Also, try aldconnect.org and they have information and videos (probably includes the one you saw). John, by joining these online groups I've learned so much and I have informed by medical care support: Physician, Endocrinologist and Neurologist. The Baclofen is used to stop my feet from spasms and jerking which is most pronounced in the nite. Sometimes I have taken 600 mg of Gabapentin to alleviate the burning pain. When it is most severe, I wish I could detach my feet (amputate). But is a constant bother. You are not alone.

Posted by shelmom533
31 Oct 2016, 01:44 AM

Hello all, I am a sixty-one year old woman, I started having crazy symptoms of "tingling legs and tight feet" about five years ago. I was seeing several doctors due to some feet concerns from a running injury, and would mention these symptoms to them and they would look at me like I WAS crazy! A neurologist even told me, "yes, you have a neuropathy, but if it's not diabetes...." she shrugged her shoulders in a "I don't know what to tell you" type of answer. Well, I became very frustrated, and the symptoms became more intense. I describe the feeling in my feet as that of them being squeezed in a vice-grip ALL THE TIME! Although we knew that ALD was present in our family, with two brothers and a nephew with symptoms, we were always told by the doctors, "women carry it, but men get it" - so I had no thoughts that these symptoms would be related. Randomly, my sister was doing some investigating because her 25 year old son was suffering. She came across the following video on YouTube: https://www.youtube.com/watch?v=QoTEB3kDWY8 which explains the disease in the best way I have seen. About in the middle of the video the commentator explains how women can start having symptoms of "tingling legs & tight feet" in their fifties- WOW, it was right in front of me, but I never gave this disease a thought!! It was a good/bad revelation - good to know I wasn't crazy, bad to know I had an incurable disease that will affect me the rest of my life. The missing gene was confirmed through a blood test, and I was able to be seen by a genetic neurologist at Mayo Clinic in Minneapolis. I am a "naturalist", preferring not to put drugs in my body - especially when they are not proven to help. I continue to work, but it is becoming more and more uncomfortable every day. Sleep is a real problem for me as well, John! I just try to keep a positive attitude and put one foot in front of the other every day. I love to run, and ran three marathons before symptoms started, but running, too, has become more and more difficult. I would love to hear from any other women that have had AMN hit them in their "Fifties' - I do not know anyone else that I can compare notes with. If you have not seen this video, do watch it! It was very helpful for our family, with six members at this time diagnosed with the missing gene, the video explains the different types of symptoms involved. Also, John, make sure you find a neurologist that is willing to learn about the disease, it is so rare, that it does a special doctor to take on the cause! The five living members in our family all see the same neurologist in Grand Rapids Michigan. Shelly

Posted by Unsworthj
29 Oct 2016, 02:00 PM

Thanks Josepanton, I am glad that you do not have this neuropathy pain. My wife and I love Barcelona, it is a beautiful city! Thanks for responding, John Unsworth Fort Worth, Texas

View Full Thread (4 more posts)
ALD Connect meeting Nov 16-17 Created by BrittanySpaniel
Last updated 30 Oct 2016, 03:32 PM

Posted by bsc78
30 Oct 2016, 03:32 PM

I'm attending, and I'm really looking forward to it. The past ALD Connect events have been a great opportunity to talk to others dealing with the same things I am. Hope to see as many of you who can make it. Some travel assistance is being offered.

Posted by BrittanySpaniel
27 Oct 2016, 06:12 PM

I urge you to register and come to the ALD Connect meeting in San Diego on November 16-17. The world's top specialists will present, and there will be significant updates on upcoming treatments for children and adults. We have three candidate therapies in the pipeline for adrenomyeloneuropathy (AMN)! It will be an event rich in content, fellowship and hope for the future. http://events.r20.constantcontact.com/register/event?oeidk=a07ed9aipfw6cbe6cee&llr=e8ntkipab

Community News Articles
Content podcast

RGI/RareShare Ask the Experts Podcast Series-Adrenomyeloneuropathy Syndrome

Publication date: 2 Jun 2017

Community: Adrenomyeloneuropathy

Podcast

Rare Genomics Institute and RareShare are proud to invite you for the upcoming podcast discussing:

Living with Adrenomyeloneuropathy (AMN) -A Clinical & Research Perspective


Default article

Adrenomyeloneuropathy (AMN)/Adrenoleukodystrophy (ALD) Podcast Series-06/02/2015

Publication date: 2 Jun 2015

Community: Adrenomyeloneuropathy

Podcast

Featuring Dr Weston Miller (Univertsity of Minnesota), Dr Jay R Shapiro (Kennedy Kreiger Institute, John Hopkins University), Ms Ann Moser (Kennedy Kreiger Institute, John Hopkins University) and Dr Jimmy Lin (RGI)


Default article

Adrenomyeloneuropathy (AMN)/Adrenoleukodystrophy (ALD) Podcast Series, Session II (06/14/2017)

Publication date: 14 Jun 2017

Community: Adrenomyeloneuropathy

Podcast

Featuring Dr. Paul Orchard (University of Minnesota) and Dr. William Rizzo (University of Nebraska) answering community questions about Adrenomyeloneuropathy (AMN). Hosted by Imogen Crispe & Deepa Kushwaha. (Music credit:www.bensound.com)


Amn ebook

AMN/ALD: A Clinical and Research Perspective (Rare Genomics Institute & RareShare)

Publication date: 27 Feb 2017

Community: Adrenomyeloneuropathy

E-Book

Adrenomyeloneuropathy (AMN) is a rare inherited metabolic disorder that affects approximately 30,000 people worldwide.
Adrenomyeloneuropathy (AMN) is also known as X-ALD, Addison Disease with Cerebral Sclerosis, ALD, AMN, Bronze Schilder Disease, Melanodermic Leukodystrophy, Schilder Disease, Siemerling-Creutzfeldt Disease, SCD, Sudanophilic Leukodystrophy, XALD, X ALD, X-linked adrenoleukodystrophy, X linked adrenoleukodystrophy. 


Community Resources
Title Description Date Link
United Leukodystrophy Foundation, Inc.

The United Leukodystrophy Foundation (ULF), incorporated in 1982, is a nonprofit, voluntary health organization dedicated to providing patients and their families with information about their disease and assistance in identifying sources of medical care, social services, and genetic counseling; establishing a communication network among families; increasing public awareness and acting as an information source for health care providers; and promoting and supporting research into causes, treatments, and prevention of the leukodystrophies.

03/20/2017
Oliver's Army

Oliver's Army is a registered charity in the United Kingdom that has been formed to raise money for ALD research. In 2007 the Organization has pledged £100,000 to the Max Planck Institute in Germany.

03/20/2017
FightALD

The mission of FightALD is to educate medical professionals and the community about the symptoms of ALD and AMN to hopefully enable people who are affected get an accurate diagnosis.

03/20/2017
AMN Help

A website about Adrenomyeloneuropathy

03/20/2017
ALD LIFE

ALD LIFE aims to help all affected by or interested in adrenoleukodystrophy and adrenomyeloneuropathy, whether personally or medically. We will try and help you to become Aware, Learn and Discuss the many implications of this devastating disorder.

03/20/2017
ALD Foundation

The website of the ALD Foundation

03/20/2017

Clinical Trials


Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

Community Leaders

 

Expert Questions

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chrisphillips71 Message
15 Feb 2010, 11:28 PM

Dave,

 

Can you please update us on the status of RPI-78M? For example, are any studies currently being performed? Is there an estimate on when RPI-78M will be submitted to the FDA for approval?

 

 

Also, a brief synopsis on the the expected benefits of RPI-78M would be helpful. For example, does RPI-78M reverse the effects of adrenomyelneuropathy or does it just halt the course of the disease?

 

 

Your thoughts are greatly appreciated.

 

Thank you.

 

Answer

Thank you for your question. As many of you know, RPI-78M, was under study for the treatment of AMN. Nutra Pharma completed this study in July 2008 and released initial positive safety data in August 2008. Currently, the data from this study is under review. Until the final analysis has been completed at the MHRA, Nutra Pharma cannot release any additional details. The MHRA is a British regulatory agency, similar to the FDA in the United States.

 

 

Best regards,

 

David

Community User List

I am a volunteer podcast organizer for RareShare.
I'm 55. My youngest son died 15 years ago of ALD at age 10.
evliyim 3 çocuğum var fizik öğretmeniyim malülen emekli oldum
My husband has been diagnosed with AMN. Looking for others with this condition to compare treatment options and symptoms. Thanks :)
My husband was diagnosed with AMN a year ago. I am looking to find out as much as possible about this disease and things we can do to help him and help to elevate his symptoms.
AMN carrier with early symptoms
Carrier AMN, mother of adolescent boy with Addison-only type ald, EMT-I, paramedic intern
I lost my 8 year old son to ALD in September of 2003. I run the non-profit organization Fight ALD-Fighting Illness Through Education to expand knowledge to the medical community about both ALD and...
I'm a symptomatic carrier of AMN, 56 years old. I was diagnosed about 10 years ago. Currently use a wheelchair, can walk short distances with forearm crutches. I don't have pain but do have severe...
Husband has adult onset of AMN

I have a son with cerebral adrenoleukodystrophy and a daughter that is a carrier. I am a symptomatic carrier. 

My family is wanting to learn more about AMN
I am a 40 yr old female with ALD. I have 3 children. My oldest son passed away at age 8 from ALD in 200, found out my my middle child has AMN 4 1/2 yrs ago when she was 15, and found out my last...

Comfirmed diagnosis of AMN (3 generations confirmed).

No cerebral involvement known. 

Always on the hunt for more knowledge and understanding. 

55 year old male who suffer with AMN and Addison's disease.
Hi,

 

I've been struggling with a variety of symptoms over several years. In 2006 I was diagnosed with secondary Adrenal insufficiency and hypo thyroidism. My legs now are are stiff and weak as...
I was diagnosed with AMN in Jan'15, based on symptoms progressing over the past decade. My son (born Sept'12) was diagnosed with X-ALD a couple of weeks later based on a blood test.
spouse of AMN
26 year old lad from the steel city of Sheffield.

 

Diagnosed with AMN in 2012 but realise now I was showing signs a few years before.

 

Always been a very sporty lad love playing football,...
Program Manager, Scientific Programs, RareShare
It took me 3 long years to finally get my diagnosis in April of 2013. I'm looking for any help or information from others. I have been unable to locate a doctor that can treat my disease. Usually I...
I'm a ADRENOMYELONEUROPATHY (AMN) patient. 30 years old, adrenal insufficiency, uses Lorenzo’s oil, bladder dysfunction, sexual dysfunction, visual defects, difficulty in walking, from Turkey
My husband has this rare disorder called Adrenomyeloneuropathy (AMN). We haven't been able to find much information about it, the Drs around here have never heard of it so it's frustrating not...
I am project manger for Uk charity ALD Life, I am also a carrier of Adrenoleukodystrophy, and have carrier symptoms similar to AMN. My son has Adrenoleukodystrophy and Addison's disease
Diagnosed with AMN in December 2011. Mild to moderate AMN, no adrenal insufficiency.
London based work in purchasing Local Government..... married to Martina 2 grown up children Mark 31 Heather 28 Liverpool FC supporter and Middlesex CCC lower leg spasticity issues diagnosed in...
I have this condition, I live in Florida, I can't find anyone whom knows much about this condition & what I am enduring & what's to come.
After 3 long years of many doctors visits and medical procedures I was diagnosed with AMN back in April of 2013. I'm finally reaching out to others in hopes that it will help my situation in one...
My dad was diagnosed with Adrenomyeloneuropathy when I was 5.
Male with AMN, over 50, with very active lifestyle. I average about 50 - 60 miles on bike each week and can still run a 5k. Trying to stay active as long as the body will let me.
My son aged 31 is suffering from adrenomielopatologia. I joined to meet people who can give me advice on the care and diet necessary
My fiance was diagnosed 2012 aged 22 with AMN.

 

We are still learning about this disease and hoping to find out as much information as we can!

 

I am Mom to 4 amazing kiddos....3 on earth and 1 in heaven.

 

 

Jonathan was the oldest. He passed in 2000 due to ALD. It was a disease that I had never heard of before, (I was adopted at...
I lost my twin brother at 29 yrs old in 1999 from ALD. He was diagnosed with Addison's while I freshman in high school after suffering thru what our parents thought was a horrible case of the flu....
Interested in therapies for AMN
I'm 52. I have adrenalmyeloneurapathy. I use a cane regularly. I am seeking qualified neurologist, PT and other caregivers in Los Angeles area.
Still searching
Abdominal pulsing among amn members herein. Any experiences please or thoughts

With 42 years old noticed,

47 years diagnosed,

now I am 55 years old.

Long distance walking problem.

Spastic walking. Mentally stabile.

Taking Cerluten for last two years. Cerluten effect...

I'm a patient of AMN hope to find a cure

Hi my name is Michael, I am 31 years old and I work part-time as a personal trainer and wellness coach. Besides my personal training certification I have a Bachelors degree in...

Hi. My name is Adam. I have ALD.

 

I also have some pain in my legs. I want to talk to some people about a fix to help me with the pain.

 

I am a 21 year old male with AMN
My father died in 1995 with AMN, my son and I are now sick.
My name is Kimberly, and I have AMN. The disease has been passed down in my family for many generations. My older brother passed away of ALD in 2001. My mother has AMN. Her father and his two...
I have was diagnosed with Addison's disease and AMN, adult onset, spinal cord limited with severe muscle spasticity in 2010 in conjuction with a collaberation of 4 leading research hospitals in the...
I am 56 year old white male. At age 31 lost coordination and dx with MS. In 2000 had baclofen pump implanted and learned I had addison's as well. From that I received AMN dx.

 

Currently use...
58 years with adrenomyeloneuropathy and a good attitude
I am the wife of a 47 year old man positive for AMN, and the mother of a 22 year old daughter positive for AMN, and the daughter-in-law of a 68 year old woman misdiagnosed with MS ... the...
From the top, my great-grandmother had a son who died, "after a short illness," or, how the family called it, the "summer flu." My grandmother was a carrier, obviously. My uncle Stuart died of ALD...
I am 64 and have AMN. Symptoms began to appear in my early 40s, but looking back there were warning signs earlier in my life. Things like tripping when I ran, unable to serve when I tried to learn...
_Hello, I think I've been on here b4 but with memory problems, not sure. My name is Deb, live in Texas & have X-linked ALD or AMN. I've been diagnosed since '93 and am doing fairly well. I am in a...
Diagnosed with Addison's at age 41. Have taken cortef/prednisone and florinef since then. Started experiencing neuropathy in the bottoms of my feet at age 48. Was finally diagnosed with AMN at age...
My spouse was diagnosed with AMN four years ago at the young age of 24. His cousin died from it at the age of 30. We need hope.
I am a 41 year old mother of three. I was originally diagnosed with MS in 2005. Further deterioration in my health with no clinical explanation led to seeing a new neurologist in 2012. New testing...
Husband diagnosed correctly 7 years ago, but has been living with symtoms for 15 years. Was part of John Hopkins study. 67 years old.
I have been dealing with this disese for 17 years. I found a nutritional supplement and it is working. Drop me a line anytime. I am willing to discuss my disorder with other people and help others...
Diagnosed with AMN Nov 2009 and Addisons in Dec 2002
I have been living with a multitude of symptoms for 25 years and just wanted to know why I was progressively degenerating. I have incomplete quadriparesis (spinal cord injury at C3 and C6), Adrenal...
A father of 3. Have been experiencing progression of this disease since 2001
I have a son with AMN. Showed Addisons at age 11 , miss dx'd untill 16 , diagnosed at 22 with AMN , in wheelchair at 23 , very successful business man in New York , now 31. Im a father still...
My name is Anthony, I am 23 and I have adrenomyeloneuropathy. I live in Albuquerque, New Mexico and i am not working at the moment. I am interested in talking to anyone, I am just curious to know...
I am a 55 year old female recently diagnosed with AMN. I guess I am relieved to know this is not in my head as I had been to another neurologist 4 years earlier who thought I was mad. I now have an...
Retired, try to be active swim or treadmill with weights
I'm a 35 year old male, I was diagnosed with Addison's in 2002 and I lived a normal live until July 2009 when I had urine retention and had to be catheterised then my legs started giving way and I...
I was diagnosed with Adrenomyeloneuropathy in January, had problems for about 2 years. I'm now having to use a walker, bad pain, etc. Muscle relaxers help though. I live in Fayetteville, AR
I'm an ALD mom and AMN sufferer.
I am a 39 year old male from Australia with Adrenomyeloneuopathy.

 

I would like the opportunity to connect with others like me who are living with this condition.
I'm 38 years old from Barcelona, working as a Computer Engineer diagnosed with Adrenomyeloneuropathy recently.

 

I still love life even though it can bring me down. Take the good with the bad. Live life to the fullest and be as happy as you can.

 

 

Oh yeah. I'm a 24 year old male. I live in Orange...
Hi, I am the wife of an AMN patient. I look forward to meeting others like myself. I want to be a part of a group that is familiar with what I am going through, and I hope to be a valuable member...
I am a 45 yr Old wife of AMN husband (John) we have

 

5 beautiful girls, 4 which are carriers of AMN.

 

Looking for information or people who can relate with the disease and if there are...
Hi I'm Van and have AMN, just looking to connect with people and find some treatment options.
My boyfriend has AMN and I feel that I know more about his disease than he does.
I am a symptomatic adult female with AMN.
53 yr old female with AMN
I have AMN, diagnosed in the mid 90s.
_I was diagnosed with ALM in 2005. I have weakness in my legs and I walk with a cane.
I am a graphic designer from Worcestershire, England. I was diagnosed with Adrenomyeloneuropathy in January 2009.

 

 

It took a full year to diagnose AMN due to the fact that it is so...

Walk with cane

I am a friend of a man that has just been diagnosed with adrenomyeloneuropathy. I want to be there for him in a way that is not feeling sorry for him or babying him but in a way that helps him...
I have Adrenolmyeloneurophy and also Adrenal Insufficiency- Addisons disease. I am wheelchair bound. My younger brother also had this disease and died last year. I run OLIN e-Publishing &...
28 year old male, diagnoses 5 years ago.
My son has AMN
I was dianosed in 1993 with X-linked ALD after my nephew was diagnosed the same year. He passed away September 28, 2004 being just 9 years old. It was on my birthday. My father and I had been...
My husband and I have been married for 18 yrs., we have two boys and one daughter. My husband was diagnosed with AMN in May, 2008. Looking to find others to discuss living with this disease.
Im a 48 years old male from Sweden. I was diagnosed with AMN 7 years ago. My symtoms started long before that with gradually increasing stiffness of my legs, difficulties in walking and balance...
My husband was diagnosed with AMN five years ago at age 52. Was diagnosed with Addisons disease at 24.

 

Also has hypothyroid. He has problems at times navigating stairs. Also balance is wobbly...
Now 34, began having symptoms since 24, worsen by 28 (when diagnosed, previously diagnosed w/Adisons since 9 years old). Now use a cane and wheelchair for long distances.

 

 

Trated in...
I am a nurse and my life partner is a nurse who also has AMN. He was diagnosed in Aug of 1995. He a one of 3 siblings with the disease. Although his brother died from complications. We are looking...

 

Hi,

 

 

My brother was diagnosis 4 years ago with ALD/AMN desease.

 

 

i want to know if any efficient treatement is available.

 

 

Thanks,
I have AMN, I've had it since I was 27. Now I live in an adult family home so they can help me out. I miss my life before.
Well my names TimothyTorres, I was diagnosed with AMN about going on 10 years ago. But i have yet to find the help that i need to figure this decease out or slow down the process and ease the...
40 year old male. Diagnosed with AMN age 39. Symtoms started 38.
I have had symptoms since 1997
I am a mother of 4 kids and the caretaker of my husband of 16 years who has been suffering from a mystery illness for at least 4 years now. The doctors say it's in his head and the psychologists...
Hi. My step son has just been diagnosed witrh AMN. He's only 40. We want to know what to expect as doctors have said that there is no treatment.
Brother died from ALD in 1979 and I was diagnosed with AMN in 2002. The symptoms are getting worse and the buffet of pharmaceuticals keep growing. I try to focus on my family and music but it gets...
I am the Executive Director of The Myelin Project
I'am 34 yrs old and have a 9yr old daughter. I have been married for 12yrs. I was diagonis with congential adrenal hyperplais 34yrs ago. Back in early april of 2009 I was diagnois with ms ,but it...
My thirty-five year old husband was recently diagnosed with adult onset ALD. He has white matter lesions on his brain and psychiatric symptomatology.
Married with three grown up children recently diagnosed with AMN struggling to find out more and any medication, diets etc that may help. Would like to speak to others with same.
An X-ALD carrier with two daughters, both carriers. My eldest daughter has 3children, eldest grandson and b/g twins. Both of my grandsons have X-ALD.

 

I think I'm developing mild AMN too! Its...
I am the Executive Director of The Myelin Project.
I have TWIN brothers we lost one Aaron to ALD now his Twin Dillon is strugling with AMN i don't no if i can go threw this again Aaron died June 13 1994 w/ALD Dillon is now 24 and doesn't really...
my name is amanda, my husband scott has amn. we have two wonderful children.(isaac 16 kayla 11) scott has had 4 spinal surg. and alot of health problems. we live on a small farm in lincoln co. KY ....
i was diagnosed with amn at 53 and am now 62 from my late forties i have had progressive weakness and stiffness in my legs .i have excessive muscle tone and find great difficulty in walking
I am a mom of 3, my oldest is almost 18 and has asymptomatic ald. I have a few problems of my own, but my motto is this.....it could always be worse. We found out about this disease in our...
I am a 41 yr old male that has amn
I have a 26 yr old son diagnosed with Adrenomyeloneuropathy in Nov 07
I am a 32 yr old Indian from Singapore. I was first diagnosed with AMN about 10 years ago. Started with my R/lower limb. Progressively now my R/lower limb is almost useless and my L/lower limb and...
I am 63 and was diagnosed correctly with AMN three years ago. I started with symptoms in my early 50's. Was incorrectly diagnosed with CIDP. My adreno's stopped working at 6l. I have chronic pain...
I am a woman 76 years old, married, with 3 children. I myself am conflined to walker/wheelchair because of AMN; our older son was wheelchair bound for about 15 years before he died at 52 last...
I am 39 years old have was diagnosed by Kennedy Krieger about 7 years ago within about 6 months of onset of disease. I take several different types of muscle relaxers (baclofen, vailum, bentyl). I...
I am a new yorker, a high school english teacher, a husband, and a father,
Have had to live with this disease for around 12 years. Played the guitar for 25 years as my arms are not affected.
My name is Shaun and I was diagnosed with AMN last year. My legs are pretty stiff, but I keep on stretching (when I get my act together!!) which does help in my walking. I have also been doing Chi...
I have AMN and live in Ft Worth Texas.

 

I was diagnosed in 1999 but have the symptoms since the mid 1980s.

 

I'm really very lucky that it has not gone to my brain, however my wife may...
My mother has AMN.
i need suggestion for my sister illness
Suffering for 2 years.
28 yrs old and was originally diagnosed with ALD. Now have been told I mainly have AMN. Not too many side effects except that I don't walk very well and my balance is horrible. I take Zanaflex to...
Hoosier. Until about 10 years ago, an avid bicyclist and walker. Now, I can exercise bike (it's hard to fall off an exercise bike) and walk with a cane. In August, began in Kennedy Krieger...
41 year old female carrier of ALD.
hi, i've been seeking information concerning amn since my brother-in-law has been diagnosed with this disease. through m.r.i it was shown back in 2000 that he did indeed have amn , since then he...
I am the mother of a son with AMN. He just turned 30 last week. I also have a brother with the ALD gene but he only has adrenal insufficiency.

 

 

I have been dealing with this disease in...
I have Adrenomyeloeuropathy, experiencing weak legs with numbness in the lower extremeties...
My name is David Isserman and I am one of the co-founders of RareShare. If you have any questions or feedback regarding RareShare, please feel free to contact me directly at david@rareshare.org.

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