This hATTR Amyloidosis Patient Uses Cooking Videos to Overcome Food Aversion

Cooking and eating together is a great way to build closer bonds and spend time with those we love. In Malaysia, it’s a large part of the culture, as there is a belief that “eating brings people together.” This is a beautiful sentiment, but it does not give any consideration to those struggling with food aversion.

Cooking Videos to Overcome Food Aversion

Jaime has acted as her husband’s caregiver since his hereditary transthyretin (hATTR) amyloidosis diagnosis, which happened nearly a decade ago. One of his major symptoms is food aversion; he often has no desire to eat or experiences symptoms that leave him unable to eat.

Because of this, he has been struggling with poor nutrient absorption, rapid weight loss, and a decrease in body fat and muscle mass. It can be hard for him to eat with those he loves, as he often can’t bring himself to eat at all.

Jaime and her husband loved to eat together for the majority of their time together, and now that they’ve lost this, her husband feels as if he’s lost a piece of himself. To combat this problem, he’s been trying to overcome his food aversion by watching cooking videos. In a way, he’s conditioning himself to regain his appetite.

Along the way, he’s learned new ways to cook and found new dishes to try. He even makes delicious meals for Jaime and the rest of their family!

About hATTR Amyloidosis

hATTR amyloidosis falls under the larger category of amyloidosis. Affected individuals inherit a mutated TTR gene, which leads to the abnormal formation of the TTR protein. This protein goes on to form amyloid deposits, which then cause the characteristic symptoms of this disease.

Symptoms are dependent on where the deposits accumulate, as they can impact the heart, kidneys, digestive system, and nervous system. Cardiac symptoms include shortness of breath, insomnia, nausea, weight loss, chest pains, dizziness, progressive fatigue, atrial fibrillation, and swelling in the legs. If the kidneys are affected, patients will experience nephrotic syndrome, renal symptoms, and swelling in the arms, legs, abdomen, and lungs. Digestive symptoms include a loss of appetite and weight, issues with bladder control, nausea, diarrhea, and constipation. Lastly, nervous system symptoms are autonomic neuropathy, peripheral neuropathy, and sensorimotor impairment.

There are a number of therapies that directly treat the source of the disease, such as TEGSEDI, ONPATTRO, and liver transplants. For the hATTR cardiomyopathy, there are VYNDAQEL and VYNDAMAX. In addition, a doctor will work to provide symptomatic treatment.

You can read more about Jaime and her husband’s story here.

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