Here in Brazil we only have specialists in Adrenoleucodistophy - cases of kids. Do you know any center or specialists in AMN?

[angelicahca_]

AMN SPECIALISTS WORLD

[angelicahca_]

Hi my name is Maria, and my husband has been diagnosed with AMN 2 years ago. Now he is 31 years old. We are from Brazil, and here we don't have any specialists.

Since we are new at this community, we would like to know if your doctors are specialists in that desease, or if you treat with ordinary neurologists.

We are very curious in alternative treatments and if we can find a treatment center that concentrate major diversity of phenotypes.

Best regards,

Maria and Pedro

[COwithAMN Administrator AMN EASIER Volunteer in reply to angelicahca_]

Dear Maria and Pedro

I and glad that you found AMN Easier and our worldwide community. I am sorry to hear about your difficulties in finding a treatment centre for AMN in Brazil. You are right that AMN is different in some ways from ALD (the childhood disease), even though they both derive from genetic mutations in the same gene.

Most of us here on this forum are treated by doctors who specialise in AMN. AMN causes malfunctions in the way our body chemistry processes very-long-chain fatty acids (VLCFA) - i.e the body's metabolism. This means that the expertise for treatment is often not with neurologists but with metabolic specialists. For example, here in London, England, I see a metabolic specialist who is part of the neurology hospital. This link will take you this centre and I hope will clarify what I mean.

uclh.nhs.uk/OurServices/Ser...

I understand your interest in finding alternative therapies that are helpful, but I should say that there are, as yet, no "cures" for AMN. There are different medicines that many of us take to relieve symptoms. I do not want you to have unrealistic expectations for what alternative medicines can do. Some people on this forum do take various medicines which seem to help. Others, like me, have found that a lot of medicines do not help very much and that the best thing to do is to keep exercising, stretching the leg muscles and joints and eating a healthy diet. We all have different experiences and find different things helpful.

But, as you say, the first thing is to find some treatment centre for AMN in Brazil. You may have to be a bit of a pioneer and help to get one set up. I would suggest that the first thing to do is to try to find other patients with AMN. There are bound to be some. When I was first diagnosed over 35 years ago that was my first question - “do you have any other patients I can talk to?” They said there were none. But a year later I did find one, and then another, and that encouraged the health authorities to focus on the disease. In a country the size of Brazil, there are bound to be other people.

When you have time, do tell us more about Pedro’s symptoms so that people on this forum may be able to suggest some things that might help. We are all here to help you.

With all good wishes,

Chris (COwithAMN)

[angelicahca_ in reply to COwithAMN]

Dear Chris,

Thank you for the quick and helpfull response.

We are glad to be part of this community, that can connect us to other AMN-ers in the world.

Pedro today has a normal life! He has a light difficulty to walk fast, has some spasms during the night but that doesn’t bother him. He goes to the bathroom many times during the day and night, but that’s also not a problem.

3 times a week he practices Yoga, and that is excelent to stretch. He also runs 2 times a week. We think it helps him to have a better quality of life in longer years.

Our biggest concern is what probably will happen in the future.

Just to check, every year he does the RM to see if the small lesion he has in the brain isn’t growing. In the 4 past years it looks exactly the same. The doctors say we should enjoy life and don’t worry about anything. We know AMN has no cure, but we would like to have access to more information and statitistics.

It is a little bit frustrating not having other exams that could indicate the evolution of the disease in the bone marrow. It’s even worst that we don’t have acess to doctors or other people close to us that we can exchange informations.

Maybe if we could find a specialist doctor in North or South America, it would be easier to evaluate the evolution of the desease.

Thank very much for your attention, once again.

Pedro and Maria