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  • Writer's pictureKendall

Possibilities of Vitamin B1 in FA Patients

A recent foreign study is creating a lot of buzz in the Friedreich’s Ataxia (FA) community.

"Injections of vitamin B1 improved several symptoms in patients with Friedreich’s ataxia and kept patients from deteriorating further over a two-year period, according to a recently published study.

While researchers caution that the results need to be verified, the findings open up the possibility of an entirely new way of approaching treatment in FA."

"Without vitamin B1 in the central nervous system, numerous enzymes become unable to do their job. Recent studies also show that the vitamin, also called thiamine, may have other types of neuroprotective properties."

"Studies also have indicated that vitamin B1 is low in the cerebrospinal fluid of Friedreich’s ataxia patients. A smaller study also found that treating patients with the vitamin for three months improved movement coordination, speech and swallowing while reducing fatigue."

Seeing as three of the 4 specifically mentioned symptoms are affected by B1 are my main symptoms, I was hugely interested to learn more. I discussed the possibility of adding B1 to my daily regimen with my cardiologist, OB/GYN (since I am currently pregnant) and my neurologist. All 3 gave me the green light. I am starting with 110/mg taken orally daily. If I notice any benefit, I will consider the injections (all under the supervision of my team of doctors, of course.)

Although this is not a CURE, anything that helps improve my day-to-day functioning or potentially slows the progression is a WIN in my book. I started the regimen December 20, 2016. I will keep you posted with updates.

For the full study press release, click here.

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