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Description
In this webinar, cardiologist Martha Grogan, MD, and hematologist Prashant Kapoor, MD, provide an overview of amyloidosis, including tests and evaluations, treatment options and how to manage your symptoms. A question and answer session followed the presentation.
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Kevin,
We have face to face support meetings ..right column following link
http://www.amyloidosissupport.org/ and there are doctors at these meetings
For sharing, we have an online group http://www.AmyloidOnLine.com and are on Facebook
Now with this wonderful forum Mayo has provided we are nicely covered for sure.
I keep getting emails but when you hit view here it just brings you back to the main page. Where are the comments? Thank you! Great info by the way. Thank you!
It was a very interesting Webinar with great information. I hope you do this in a regular basis because this help with our living with amyloidosis and to get the latest information from renown specialist. Thank you very much.
to the right..<br />
<br />
Muriel Finkel<br />
Amyloidosis Support Groups Inc.<br />
http://www.AmyloidosisSupport.org<br />
Toll Free Hot/Help 866-404-7539<br />
http://www.AmyloidosisOnLine.com - over 1620<br />
http://www.FamilialOnLine.com - over 240<br />
Member NORD http://www.rarediseases.org<br />
http://www.AmyloidAware.com Booklet<br />
http://vimeo.com/3358025 Video<br />
<br />
Thanks for the input. It may take us a little while to get resources but hope to do these on a regular basis to update patients about treatment options.
Appreciate this presentation. Like others I think it might be helpful in the future to have separate webinars for AL and TTR. Have you any information on a new drug for TTR: SOM0226, under development in Spain by a company called SOMBiotech? They claim that it has potential to clear existing amyloid deposits from the heart. The decision tree for TTR treatment options was of particular interest. I am enrolled in the Tafamidis trial, but of the options currently available Doxy/URSO seems most probable to slow progression. What is your opinion? Has any research focused on why WT TTR primarily effects men? It seems that might somehow shed light on the causes of this condition. Thanks to all involved.
is there a way to stop the discussions from coming to your private email.. I just deleted 53 this time. Tks.
There is a link at the bottom of the email
Yes, for future we will consider separate webinars. I am not aware of the spanish drug, will check into it. We really don't know which treatment option will be best and that's why we need the clinical trials. Many examples of clinicians and scientists being surprised one way or the other about results. The male predominance is fascinating, although we do see some women with WT ATTR. It may be that women do get the disease and it "looks different" so we don't recognize it. There may be hormonal influences. This is an area of investigation and I agree that more research into gender differences may help us understand the cause and help develop treatment options.
🙂 We try to keep you happy!