I have FXTAS: Now what?

Fragile X-associated tremor/ataxia syndrome (FXTAS) is a disorder that affects Fragile X premutation carriers, typically over the age of 55. Individuals with FXTAS have tremor of their hands when they are using their hands to do activities. They also have difficulty with their walking, appearing as if they were drunk even though they are sober. As the disease progresses over time, people with FXTAS can develop problems with memory and loss of sensation in the feet. Symptoms are highly variable, with some FXTAS patients having more severe tremor and others having more balance issues. Women tend to be more mildly affected, if they are affected at all, due to the typical presence of a normal Fragile X gene on their second chromosome.

By | 2017-09-21T13:58:33+00:00 January 18th, 2017|FXTAS|Comments Off on I have FXTAS: Now what?

FXTAS Caregivers: There is Help!

Family caregivers play a critical role in managing the needs of individuals with FXTAS throughout the course of the illness. People with FXTAS rely on caregivers for a wide range of support—preparation of meals, household chores, transportation, medications, bathing, dressing, feeding, physical, emotional and social care, and managing family money.

By | 2016-05-11T11:30:26+00:00 May 11th, 2016|FXTAS|Comments Off on FXTAS Caregivers: There is Help!

When “Marriage” Is Spelled F-X-T-A-S

My whole marriage to my husband Vince can be described by one acronym: FXTAS. Our wedding was in April 1999. It was a second marriage for us both, and we weren’t youngsters (I was 48 and Vince was 64), but I thought we were both healthy. We had no inkling that Vince’s mind was already deteriorating from FXTAS.

By | 2013-11-20T10:32:30+00:00 November 20th, 2013|FXTAS, Hope & Inspiration|Comments Off on When “Marriage” Is Spelled F-X-T-A-S