Earlier this year, we heard advice for people living with AL amyloidosis from an AL amyloidosis patient herself, Linda. Today, we continue to elevate firsthand perspectives of people directly impacted by this rare disease.

Hear from Donna, a wife and mother, and caregiver to her husband Mike who is living with AL amyloidosis. She describes some unusual symptoms that were manifesting in Mike and how they finally uncovered his diagnosis together. Meanwhile, Linda, a nurse by trade, recollects how her symptoms all seemed common on their own, but when she put everything down on paper – she could see how the different systems of her body were affected. Neither Mike nor Linda’s journey to diagnosis was straightforward. It took time, tests, patience and the help of loved ones and medical professionals alike to put the pieces together before finally arriving at their respective diagnoses.

AL amyloidosis can manifest in a variety of ways and many of the symptoms, including frothy urine, fatigue, anemia, and bone pain, are the same as those of more common diseases. This makes the disease difficult to diagnose, and even more difficult to diagnose early. Research shows almost one third of patients received a diagnosis after visiting five or more physicians.¹ Learn more about AL amyloidosis and its symptoms here.

We look forward to continuing to share inspiring and informative accounts from real people and their support systems. It is their stories, their strength and their determination that fuels our work at Prothena.

 

References

¹ Lousada I, et al. Light Chain Amyloidosis: Patient Experience Survey from the Amyloidosis Research Consortium. Adv Ther. 2015 Oct;32(10):920-8. doi: 10.1007/s12325- 015-0250-0