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What Documentation/test Results Do We Ask For To Know That Our Grandmothers Amyloydosis Was Typed?

A MyAmyloidosisTeam Member asked a question 💭

Children and grandchildren are wanting to know if it was the hereditary type or not. Have asked Haematologist for months now but not had anything in writing. Have got a phone consult tomorrow but worried we will just be talked over and not get what we need for the family to know if they could be affected or not. Thank you so much!

May 3, 2023
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A MyAmyloidosisTeam Member

Hi Sofia,
I see, your spouse was diagnosed with AL amyloidosis. AL is not not known to be hereditary. I know with me, my biopsy tissue was sent to Mayo Clinic, where it was typed, and a DNA test was done and that time. Ask for a copy of the medical records, which should include all lab and pathology.
Your hematologist should not deny you any of your results.
Not sure where you are located.

May 4, 2023
A MyAmyloidosisTeam Member

You can get tested via Invitae company by a saliva test they send to your home. Register your own patient account and have your physician register an account to help submit the order/application forms. If you are approved, sponsoring drug company Alnylam may cover the testing cost. (This is how I got tested).

Click on this link:
https://www.invitae.com/en/providers/test-catal...

Hope this helps! 🙏 💛

May 3, 2023
A MyAmyloidosisTeam Member

Be your own advocate! Be pushy if you have to!

May 3, 2023
A MyAmyloidosisTeam Member

Good advice from Mary3. Thanks. Frank2 here.

May 7, 2023
A MyAmyloidosisTeam Member

Thank you. That is good to know!

May 3, 2023

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