Podcast Session: "Living with AMN – A Clinical & Research Perspective”

[SongStream]

From the AMN RareShare Community:

We are proud to invite you for the upcoming podcast session discussing:

“Living with Adrenomyeloneuropathy – A Clinical & Research Perspective” featuring

Dr Paul Orchard, MD and Dr William Rizzo, MD

On June 14, 2017 at 10:00 AM EDT

The 45 minute segment will feature experts discussing the latest developments in AMN.

Here is your chance to ask any question/concern/issue you may have about AMN. Submit your question(s) NOW with this form and/or register to participate in the program. RareShare AMN Podcast Registration form

You will be able to listen to the podcast here both live, or after it has been recorded.

The podcast will also be available on the Rare Genomics iTunes channel after the recording.

On behalf of Rare Genomics Institute and RareShare we really appreciate your participation,

Sincerely,

Imogen Crispe

Podcast Organizer

Deepa Kushwaha, PhD

Project Manager (Scientific Programs)

Rare Genomics Institute/RareShare

rareshare.org

raregenomics.org

[bluejadedwho]

Hello! This is very exciting. How does one access the podcast on the 14th?

Question:

*I have been in chronic pain for over 12 years with having AMN. No one has ever been able to understand why, or offer much help. What are your thoughts on the possible cause and treatment options? I seem to be limited on supports in Canada. Are there any professionals that you know of here? Thanks!

-Patrick

[SongStream in reply to bluejadedwho]

Hi Patrick,

For some reason the link will not appear for the podcast after 6/14 . However, if you google Rare Genomics Institute, go to their Home Page and click Patient Resources, you will find Podcasts and that will take you to the listening page.

To register, follow this link: Rare Genomics Institute.

docs.google.com/forms/d/e/1...

I, too, have chronic pain caused by painful neuropathy on the soles of my feet. This topic has been addressed in our community and also at inspire.com. Pain is more prevalent it seems with AMN carriers; although, there are postings from other males as well. What type and where is the pain you are experiencing?

Steve

[bluejadedwho in reply to SongStream]

The pain I have doesn't appear to be nerve related. It feels like pain from muscle tightness. It starts in my lumbar spine which is quite unbearable when sitting, and I can feel it down my legs.

[julie_ in reply to bluejadedwho]

I'm not a medical professional but I have pain which I can feel originates in my lower back (lumbar). I am not able to sit for periods of time lasting more than 30 minutes (nor sit and probably lie down as in sleep) without effect on my walking ability. What my body needs is to remain active, such as breaking every hour and taking a short walk or climbing a flight a stairs. My worst moments are at my desk job. I have a standing desk so I can work standing but as I mention, I'm still idle. When there are deadlines to be met, I simply can't get away from my work area!

Do you work out or stretch or have other activities to keep you active otherwise? I work out 4 times a week and stretch everyday. This helps back pain but does not remedy it, unfortunately.

[julie_]

Thanks for posting, Songstream! I unfortunately won't be able to participate as I'll be at work, but I have now subscribed to this podcast and will wait for the re-broadcast.

[bluejadedwho]

Doing physio now three times per week, which I should have done years ago. Movement and stretching (not in excess) definitely helps, however I would love to figure out why there is pain. My neurologist claims I shouldn't have pain; which is very frustrating, as I do!

[julie_ in reply to bluejadedwho]

I know there are many of us who have pain, so your neurologist probably isn't informed as well as we are! There is such a difference between when my body is/has been recently active and when I am not active - the pain! Does atrophy cause pain?

[bluejadedwho]

Hello! Am able to ask another question for the podcast tomorrow? If so, would I do it here?

[SongStream in reply to bluejadedwho]

Sorry for my delay. I believe that questions are submitted prior to the broadcast which begins at 10 am EST.