Advocating and raising awareness this Rare Disease Day

February 25, 2021 by emily0NDIS

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness about rare diseases and their impact on patients’ lives.

Did you know 1 in 20 people will live with a rare disease at some point in their life? Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day is an opportunity to improve our collective knowledge of rare diseases while advocating for additional research and policies to address the needs of those living with rare diseases.

One of our participants, Janette, lives with Friedreich’s ataxia; a rare genetic disease that causes a loss of control over muscular actions, sensory function and a decrease in fine/gross motor skills and coordination. This results in difficulty walking and a loss of sensation in the arms and legs.

The good news is research suggests exercise and specific activities can aid in reducing the severity of the physical impact Friedreich’s ataxia has on the body.

While Janette can’t stand independently, she can perform a wide range of exercises from her wheelchair.

Over the past three years, Janette has been working with Therapy Care’s Allied Health team her health and fitness.

Janette says, “Since starting with Therapy Care, I’ve definitely noticed I am continuously getting fitter, stronger and even happier.

“Day-to-day activities such as getting out of bed and on and off the toilet are easier and I require less assistance. I have a long way to go but I’m really proud of how far I’ve come.”

Janette’s current health and fitness goals are:

? To stand up without the assistance of a therapist but still using physical aids such as kitchen bench or bar

? Perform a leg extension with correct foot positioning (no inversion)

Janette’s long-term goal for Janette to stand up and sit down independently without assistance from therapist or assistive technology.

Allied health assistant, Nicole, prescribes exercises that challenges Janette, without being outside of her abilities.

Nicole and Janette see each other twice each week for one hour and additionally, Janette attends Therapy Care’s rehab group weekly which runs for two hours. On top of this, Janette attends the day group program, consults with our speech therapist, receives guidance from a dietitian, has in home support and accesses the community via regular social supports.

“Since day one Janette has always been happy, cheerful and really determined.

“Her confidence and enjoyment throughout the sessions has increased as her physical function has improved. The satisfaction of achieving the various goals we continually set for Janette really keeps her motivated. It’s wonderful to see,” says Nicole.

Although there is currently no cure for Friedreich’s ataxia, it’s great that Janette has support on hand to reduce the severity of her symptoms.

If you have a rare disease and need help managing your symptoms, feel free to reach out to us at info@therapycare.com.au.

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