Wellington, New Zealand

How often do you think about Muscle Strength?

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Written by Hopestore

Organisation: Muscular Dystrophy New Zealand | How they make a difference: By providing specialist information and practical support to individuals and whānau who live with rare neuromuscular conditions. They promote freedom of choice and a responsive society. | Location: National office in Auckland, 4 regional branches across NZ | Catalyst of change: Ronelle Baker (Chief Executive), Patrons and Ambassadors, National Council, Staff and Volunteers

It’s one thing to support others with complex and continuous struggles. But it’s another thing to have experience of the same struggles and give your life to making someone else’s life better. The governance structure of the Muscular Dystrophy Association of New Zealand (MDANZ) comprises of leaders who have lived experience of neuromuscular conditions and therefore has a member driven approach. Their logo represents a person shown in the form of DNA – a double helix which represents the genetic component of many neuromuscular conditions. It also reflects the strong commitment to families and the acknowledgement of whakapapa or family histories, woven through their member’s stories. They believe in strengthening and supporting both the individuals with neuromuscular conditions, and their whānau and communities of support. And they’ve been doing it since the 50’s. Their commitment is relentless and a great example to us all.

What is a Neuromuscular condition?

The term “neuromuscular condition” encompasses many genetic or acquired conditions/diseases that impair the functioning of the muscles and/or their direct nervous system control.  These conditions primarily result in muscle wastage and living with the progressive decline in strength is a constant challenge for MDANZ members and their loved ones.  The conditions they cover are incurable and there are limited treatments available.

Symptoms include muscle weakness, pain and fatigue, and sometimes rigidity, loss of muscular control and twitching or spasming. The impact of these symptoms means that things like lifting the kettle to make a cup of tea, carrying shopping bags, walking and driving become increasingly hard.  Over time, serious complications in the areas of speaking, swallowing, breathing and heart function may be experienced.

The age that symptoms appear varies for each condition. For some, symptoms are noticed in infancy, for others not until much later in life.  The outcomes of living with a neuromuscular condition can include less choice in the areas of education and career opportunities, as well as less time overall in the workforce.  As symptoms progress independence is lost and in some instances, life expectancy is shortened.

MDANZ covers around 60 neuromuscular conditions and can provide information and support.  Find out more about a condition http://mda.org.nz/Neuromuscular-Conditions/Conditions-Overview

For most of us we can’t imagine the impact of such a condition on our lives or what it would mean for our families. And even though the conditions are incurable, there is much we can do to help support individuals and families who live with this every day.

What you can do to help

Find out more at http://mda.org.nz/About-Us/Our-Vision

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