Update: Hip Flexor Research

[Guest guest]

Hello everyone,

I just wanted to pass along an update with regard to the hip flexor research

project at the National Hospital for Neurology and Neurosurgery (Institute

of Neurology).

The study is specifically for genetically confirmed patients with CMT1A who

are seen through the clinics at the national. They are still seeking

volunteers. It is a 10 month commitment. If you are at all interested

please let me know and I can ask the researchers for more details.

The first session, which is to get baseline readings, lastest for about 2.5

hours for me. The work is thorough, taking measurements on muscles and the

force you demonstrate. It also was accompanied by a total sensory

evaluation. I always find this amazing as I just cannot feel certain things

in my feet, on the right side, which is always a little freaky. I also

learned that the pain nerves in your skin / feet are not the same as the

peripheral nerves impacting CMT, as I said I couldn't understand why I had

so little sensation but could feel every crack in the pavement / felt hot

sidewalks / no longer could stand walking barefoot. Who knew?

The commitment is 10 months, with a monitored exercise routine and home

visits by the researchers monthly to measure progress. I am excited to help

with specific research into improved hip flexor strength and how this

translates into gait and movement for CMT patients. Even though my case

seems mild, I know that any work they do is measured against my own personal

baseline, so am super curious to see how the results go.

Will keep you all posted.

Best wishes,

Donna from London