Drug offers more convenient approach for those with hereditary transthyretin amyloidosis
Numbness and tingling in her feet, heart palpitations, dizzy spells and wrist pain that felt like carpal tunnel syndrome pushed Nancy Kim of San Diego to confirm that she has the same rare genetic condition that has devastated her family, forcing her father to receive a heart transplant and killing six of her family members.
What feels truly amazing, Kim adds, is that this new drug is the second therapy with such effects to be made available to her since the Cardiac Amyloidosis Program at UC San Diego Health diagnosed her in 2018. Those are serious gains, especially for someone who has been told she has particularly deep and thin veins in her arms, making each infusion visit with the previous drug a trial for medical staff and their patient.
“It just makes you feel like there is hope, that there are researchers out there who are looking at this disease, even though it’s so rare, and looking for ways to improve our condition — hopefully, some day, even find a cure,” Kim said. While that’s certainly the hope, Urey said that clinical trials focused on the drug’s safety and ability to lessen symptoms. Advantages in long-term survival will take additional research.
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