Sharing Stories of Those Living With a Rare Disease

February 28, 2021 by emily0NDIS

Today (28 February 2022) is International Rare Disease Day; a day dedicated to celebrating the unique stories of all individuals within the rare disease community.

Today we join forces and actively advocate for additional research, policies, and discussions that highlight the needs of those living with rare diseases. The theme for this year is ‘share your colours’. It calls for those living with rare diseases to share their personal stories, and calls on everyone else to listen.

Therapy Care strives to be an industry leader in advocating for and accommodating the needs of individuals living with a rare disease. We believe in equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. One way we practice this is by ensuring our team is educated on the many ways a disability may present, no matter how rare. This allows accurate modification and specialisation to a participant’s NDIS goals and treatment plan.

This Rare Disease Day we will be celebrating Therapy Care’s participant, Natassa Bassin. Natassa is living with Mitochondrial encephalomyopathy, lactic acidosis, and stroke-like episodes (MELAS). MELAS is a rare inherited genetic disorder that mostly affects the brain, nervous system, and muscles. Often, individuals with MELAS are also impacted in speech and language as well as experiencing frequent and extreme fatigue.

Natassa has been working with Therapy Care since 2020 and under the NDIS receives speech therapy, recreational therapy and personal care support. Over the past two years Natassa has built relationships with the therapists and disability support workers in her team that make her feel comfortable and remain motivated to learn.

Therapy Care’s speech therapy assistant, Dominika Lipka, works with Natassa and prescribes her with tasks that stimulate expressive language, vocabulary and social skills/awareness.

“With the patience and reassurance from the Therapy Care team, Natassa has been proactively correcting her pronunciations and has a new found confidence when it comes to trying new things.

“During sessions, if Natassa has mispronounced a word, she will persistently work trial after trial to get the expression correct. Once corrected, she will thank you and share her triumphs with her family,” says Dominika.

“Natassa has a modified food diet, to adjust to her swallowing difficulties. She also enjoys reading and writing, often expressing “I am ready to learn”, or “I like this.” Lots of repetition is needed throughout the session to assist in Natassa’s engagement in tasks.

“Patients with MELAS experience extreme fatigue. One of our goals is to acknowledge and encourage Natassa to communicate when she is tired and needs rest, “ explains Dominika.

Therapy Care’s recreational therapist, Hussen El-Ache, has been working with Natassa on improving cognitive function and communication skills. This area of Natassa’s NDIS plan supports her ability to develop new routines and identifies preferred learning methods.

“Before I started working with Natassa, she had not left the house or participated in any form of leisure activities for a very long time. Through building trust, Natassa is now comfortable leaving the house with me to attend specialist appointments, participate in leisure activities and other outings where we work on her social skills,” says Hussen.

Natassa’s NDIS goals for 2022 are:
⭐ Increase her ability to turn-take with minimal prompts in games, conversation and activities
⭐ Increase access to the community in order to increase my quality of life and develop friendships
⭐ Increase her ability to confidently make decisions and choices with minimal guidance
⭐ Improve communication with others in order to regulate emotions
⭐ Gain independence by increasing her ability to communicate her wants and needs
⭐ Improve muscle tone, balance, and stamina in order to complete activities of daily living and increase overall health and wellbeing

Natassa is a very colourful person who is gaining the ability to make her voice heard through her consistent work in developing her communication and speech skills.

“Though living with MELAS has impacted Natassa significantly, Natassa’s life is not defined by her disability. Her positivity and kind nature is a true joy to be around. Without a doubt she will never fail to put a smile on your face,” says Dominika.

Although there is currently no cure for MELAS, it’s so important that Natassa 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
? 02 9626 8119

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