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Urgent: Amyloidosis and HCM

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  • Urgent: Amyloidosis and HCM

    Has anyone had or are familiar with this protein, amyloidosis? It is surrounding my sister's heart and causing organ malfunctions. I would appreciate anyone's wisdom or experience on this and how it is treated. Any doctor's familiar or specialized in this complication- his/her name would be appreciated as well.
    Thanks so much for anything you might offer to help our family who has had four members with HCM.
    HCM & diastolic/systolic HF (burn-out HCM) DX in 2010
    Brother 34, sister 45, & mother 73 passed away from HCM burn-out/CHF/DCM
    Sister @ 41 got heart transplant on Valentine's day 2002
    Oldest sister, diagnosed with HCM in 2010
    only niece cleared by genetic testing; son not genetically tested yet
    Suspected HCM in maternal grandmother (d. 39), 2nd cousin (d. 33),
    maternal grand aunt (d. 51), & maternal great grandmother (d. 50s); with hrt. conditions/hrt. surgery/kidney d.

  • #2
    Re: Urgent: Amyloidosis and HCM

    Hi Laura..

    You might want to give Lisa a call or email her. She is in Boston but should be back sometime today/tomorrow.
    Ellen
    HCMA

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    • #3
      Re: Urgent: Amyloidosis and HCM

      Laura, I'm sorry your sister is so ill. You found us, so I'm sure you have searched the internet for info on the condition. There are lots of sites on amyloidosis and some from medical facilities. I would expect them to have doctors familiar with the condition and treatment programs. Lisa will return a call to you as soon as possible. PM her and leave a phone # or message as to when you are available to talk. She will be available soon. Best wishes to your family and your sister. Please keep us posted. Linda

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