Anyone out there heard of Adrenoleukodystrophy (ALD)?

Posted by beverlymarks @beverlymarks, Jan 3 9:03am

Is anyone out there heard of Adrenaleukodystrophy? It is a genetic disease and no cure. My brother died 65 years ago and my son died 30 years ago.

Liked by Leonard

Hi @beverlymarks, have you been diagnosed with adrenoleukodystrophy (ALD)? Did both your brother and son die of the same condition?

Reading more about ALD here https://www.mayoclinic.org/diseases-conditions/adrenoleukodystrophy/symptoms-causes/syc-20369157 I see that ALD can be diagnosed in childhood or as an adult. And that the symptoms are often more severe in males than females.

Were you diagnosed with adult-onset ALD? What symptoms do you find the most challenging?

Liked by Leonard

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@colleenyoung

Hi @beverlymarks, have you been diagnosed with adrenoleukodystrophy (ALD)? Did both your brother and son die of the same condition?

Reading more about ALD here https://www.mayoclinic.org/diseases-conditions/adrenoleukodystrophy/symptoms-causes/syc-20369157 I see that ALD can be diagnosed in childhood or as an adult. And that the symptoms are often more severe in males than females.

Were you diagnosed with adult-onset ALD? What symptoms do you find the most challenging?

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Yes I have been diagnosed with Adrenaleukodystrophh. Yes my son was diagnosed with it. 65 years ago they knew nothing. My sister and mom were both diagnosed with it. Now my niece and her son were also diagnosed. My nephew was diagnosed with addisons. When will this stop..

Liked by Leonard

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@colleenyoung

Hi @beverlymarks, have you been diagnosed with adrenoleukodystrophy (ALD)? Did both your brother and son die of the same condition?

Reading more about ALD here https://www.mayoclinic.org/diseases-conditions/adrenoleukodystrophy/symptoms-causes/syc-20369157 I see that ALD can be diagnosed in childhood or as an adult. And that the symptoms are often more severe in males than females.

Were you diagnosed with adult-onset ALD? What symptoms do you find the most challenging?

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I hope you can direct me to Drs that can be helpful to help. I have a gait imbalance and I am falling alot. I also have bad headaches.

Liked by Leonard

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@beverlymarks

I hope you can direct me to Drs that can be helpful to help. I have a gait imbalance and I am falling alot. I also have bad headaches.

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Beverly, here is information about adrenoleukodystrophy care at Mayo Clinic https://www.mayoclinic.org/diseases-conditions/adrenoleukodystrophy/care-at-mayo-clinic/mac-20369166

To inquire about a specialist, please contact the Mayo Clinic closest to you: http://mayocl.in/1mtmR63

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@beverlymarks
Hello Beverly,
I have heard of it but I can’t say that I really know anything about it other than it has something to do with the X chromosome and that patients have seizures sometimes. Have you had any seizures.
I don’t know any doctors who specialize in
Adrenoleukodystrophy but I’d strongly recommend going to the Mayo Clinic. I don’t think you can beat it.
You have my best wishes, prayers, and my blessings.
Take care,
Jake

Liked by Lisa Lucier

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Has anyone tried hyperbaric chamber for any of these problems. I have been reading alot about hyperbaric chambers. Produces more red blood cells.

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@beverlymarks

Has anyone tried hyperbaric chamber for any of these problems. I have been reading alot about hyperbaric chambers. Produces more red blood cells.

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Hi @beverlymarks, Connect is an online community where you can connect with other patients and people with similar conditions. I noticed that you titled your discussion "Medical Coordiator". I believe that you meant to post it to this discussion you started about ALD. I've moved the messages together so we can help form a group of members talking about adrenoleukodystrophy.

Here's information about Hyperbaric oxygen therapy from Mayo Clinic https://www.mayoclinic.org/tests-procedures/hyperbaric-oxygen-therapy/about/pac-20394380

What have you been learning about hyperbaric oxygen therapy in relationship to ALD?

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@jakedduck1

@beverlymarks
Hello Beverly,
I have heard of it but I can’t say that I really know anything about it other than it has something to do with the X chromosome and that patients have seizures sometimes. Have you had any seizures.
I don’t know any doctors who specialize in
Adrenoleukodystrophy but I’d strongly recommend going to the Mayo Clinic. I don’t think you can beat it.
You have my best wishes, prayers, and my blessings.
Take care,
Jake

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Thank you so much for responding to my text.It is with your chromosomes. There is no cure for it. My brother passed on 65 years ago and they knew nothing about it. I also lost my son 10 years ago,he had cerebral Ald which affects the brain. I have the neuropathy part which I have a gait and balance.My sister is in a wheelchair and she had a colostomy. I have a son that has ed with it and other family members. I pray that there will be a cure soon. I took my son to Kennedy Kreiger and they diagnosed him I f anyone has any insight about it I would be open to anything. I pray.

Liked by Leonard

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@beverlymarks

Thank you so much for responding to my text.It is with your chromosomes. There is no cure for it. My brother passed on 65 years ago and they knew nothing about it. I also lost my son 10 years ago,he had cerebral Ald which affects the brain. I have the neuropathy part which I have a gait and balance.My sister is in a wheelchair and she had a colostomy. I have a son that has ed with it and other family members. I pray that there will be a cure soon. I took my son to Kennedy Kreiger and they diagnosed him I f anyone has any insight about it I would be open to anything. I pray.

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I would say I'm sorry but I'm pretty sure you hear a lot of that just like I do. All I can say is hang in there you have a lot on your shoulders just like me. I bet you me and you are a lot alike because we take care of everything and I mean everything. So I know exactly what you're going through. If you ever want to message me Montauk you're more than welcome to. I know the struggles of everyday life and every day is different. 

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Hey. Good to hear from you and again.

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How's your son. U know what's funny. Ever since by husband got hurt I think ty miliary. Nobody asked my how I'm doing. I know it's hurtful the things that but I feel that way all the time.

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Does that happen to you a lot

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@veteranspouseinpain

How's your son. U know what's funny. Ever since by husband got hurt I think ty miliary. Nobody asked my how I'm doing. I know it's hurtful the things that but I feel that way all the time.

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Thanks for asking I lost my son 10 years ago due to the disease Adrenaleukodystrophy. I hope no one has to go through that with a loved one.

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@colleenyoung

Hi @beverlymarks, have you been diagnosed with adrenoleukodystrophy (ALD)? Did both your brother and son die of the same condition?

Reading more about ALD here https://www.mayoclinic.org/diseases-conditions/adrenoleukodystrophy/symptoms-causes/syc-20369157 I see that ALD can be diagnosed in childhood or as an adult. And that the symptoms are often more severe in males than females.

Were you diagnosed with adult-onset ALD? What symptoms do you find the most challenging?

Jump to this post

I was Diagnosed with Ald. I can say I noticed.3 years ago with the neuropathy in my legs. I now have to use a walker to get around and balance. I also developed skin itching. Also Irritable bowel syndrome. My neurologist has never seen a patient with Ald. If I could I would do stem cell. I would also take Lorenzo's oil. It has not been recommend. If anyone has any information, please let me know

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@beverlymarks

Has anyone tried hyperbaric chamber for any of these problems. I have been reading alot about hyperbaric chambers. Produces more red blood cells.

Jump to this post

A few members on Connect who've mentioned hyperbaric oxygen therapy may have some input for you on this treatment in general. @shwetha @thompsonm mentioned it for treatment of hypoxic ischemic encephalopathy, and @ndttech @ericvnelson @navid80 mentioned it in the context of neuropathy. @johnbishop may also have some input.

Have you read about treatment of adrenoleukodystrophy (ALD) specifically with hyperbaric oxygen therapy, @beverlymarks? If so, what were your thoughts from what you read?

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