To Learn About hATTR Amyloidosis, Turn to Those With Experience

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by Jaime Christmas |

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If you are a longtime caregiver for a loved one with hereditary ATTR amyloidosis, you are probably knowledgeable about the condition.

My name is Jaime, and I have been a caregiver to my husband, Aubrey, who has been afflicted with the disease for about 10 years. Although Aubrey wasn’t diagnosed until 2013, his deterioration started three years before that.

At the beginning of his journey, I educated myself with any information about hATTR amyloidosis that was available online. At the time, prognosis after diagnosis was three to five years, and liver transplantation was thought to be a cure, so Aubrey received one in 2016.

More research has been conducted since 2013, so we now know a new liver won’t solve the underlying issue. In people with the condition, transthyretin proteins misfold and clump together to form amyloid fibrils. These are deposited in various organs throughout the body, and a buildup can cause damage.

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In countries like New Zealand, where medical professionals have little understanding of the condition, living with it can be particularly daunting and stressful. Even today, many diagnosed patients don’t have the support required for a good quality of life, nor do they receive appropriate treatment.

I know this because I lead the New Zealand Amyloidosis Patients Association (NZAPA), and nearly every amyloidosis patient tells me the same story: They are desperate for help in managing their condition after Googling it and being scared out of their wits by what they find.

So, when they reach out to NZAPA, we have to be equipped to put them in touch with specialists who can help. Many have heart and kidney issues, and almost all were diagnosed late. There is currently no cure for the condition, but taking the appropriate medication to manage symptoms is very important. Unfortunately, treatments available in other countries have yet to be approved or funded in New Zealand.

The situation is discouraging, but that doesn’t mean we should give up. I feel privileged to at least be able to point patients in the right direction and offer them the latest information about hATTR amyloidosis.

Another key function of our association is connecting patients and caregivers. Firsthand experience will always outweigh secondhand information. Our journeys may be slightly different, but the obstacle is the same.

If you are a new patient or caregiver, reach out to those who have walked the path. You can find excellent firsthand advice and resources at the Amyloidosis Foundation, Amyloidosis NewZealand, and Hereditary Amyloidosis Canada Facebook pages.

Medical advice is essential, but we gain insight and wisdom from those in the same boat. You are not alone.

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Note: FAP News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of FAP News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.

Comments

Pamela Thompson avatar

Pamela Thompson

Thank you for sharing all the information and for the work you do. Firsthand experience is vital!!! Hattr patient/Canada

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Jaime Christmas avatar

Jaime Christmas

Thank you Pamela! You are very kind and much love from NZ to Canada :)

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Harry van Kleef avatar

Harry van Kleef

Hi Jaime
Thanks for your story and recent information above.
Harry & Joyce van kleef

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Jaime Christmas avatar

Jaime Christmas

Thank you Harry and Joyce! It is so encouraging to be sent a message from readers. I am feeling the love.

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