Coping/Self-Care

Finding out you have a rare genetic disease such as familial amyloid polyneuropathy (FAP) can be unsettling, especially if you live alone or planning to do so.…

The presence of peripheral neuropathy symptoms such as numbness, tingling, and burning sensations in the hands and feet might lead to a familial amyloid…

Peripheral neuropathy: Medications that may help to alleviate neuropathic pain include gabapentin, pregabalin and duloxetine. Medical staff can give advice…

Patients should tell the medical staff about any diarrhea they experience. Medications such as opioids (codeine and loperamide) may help by reducing gut motility.…

Both AL amyloidosis itself and treatment side effects may cause weight loss. Sometimes patients find it hard to eat and drink enough because of feeling generally…

Patients with AL amyloidosis may experience extreme tiredness, either due to the amyloidosis itself or as a side effect of some chemotherapy drugs. Tiredness can be…

In this edition we hear from John Hicks and his experience of being a carer to his wife Joyce for the last 6 years. We also have an update from Gary Mines, who was…

His symptoms began with dizziness, shortness of breath, heart palpitations and edema in the ankles, feet and calves. After visiting with multiple doctors, in 2007…

For somebody in need of a diagnosis, the internet can be a dangerous tool. However, for Darcy Tannehill, who had already dedicated most of her life to research…

In February 2014, Sondra Kunes was feeling a little more fatigued than usual, but wrote it off as being 54 and raising five children ranging from their early teens…