Of all the rare diseases in the world, or types of disability, Spinal Muscular Atrophy (SMA) has to be one of the most challenging. Especially if you’re an ambitious young woman looking to launch a meaningful, impactful career.

Meet Kerry Walsh, Colleague Experience & Operations Coordinator at Sage. Kerry was born with Spinal Muscular Atrophy syndrome and a five-year life expectancy, back in 1997. Now, in her late 20s, she has defied the expectations not only of her doctors, but a society where disability work rights are still pretty much embryonic in their development.

In this inspirational episode of Life at Sage, Kerry talks to us about the book she’s written on the Spinal Muscular Atrophy disease, Finding My Feet, as well as her journey to find a disability learnership, her entry into the Sage business via the Pathways program, and the amazing work she does to amplify disability work rights as an advocate for SMA.

What is Spinal Muscular Atrophy (SMA)?

SMA describes a group of genetic neuromuscular disorders that result in the weakening and wasting away (atrophy) of muscle tissue. There are five different subtypes of this rare disease, which vary both in terms of their severity and onset. Although there are therapies that can help to manage symptoms, there’s no known cure for SMA.

The disease involves the loss of lower motor neurons, or anterior horn cells, which are located in the spinal cord and control muscle movement. The loss of these motor neurons means that the muscles fail to receive the nerve signals that make them move, and the weakness of muscles progresses over time.

Although SMA is classified as a “rare disease,” it’s actually the second most common severe genetic disease in infants and children after cystic fibrosis, with between 1 in 6,000 and 1 in 11,000 people born with the condition.

Rare diseases—South Africa

Kerry Walsh is one of more than 4.1 million people in South Africa living with a rare disease.

Today, there are over 6,000 kinds of unique, rare genetic conditions—making them collectively fairly common. And, yet, because of the scarcity of research into each one, they can leave those who live with them feeling isolated and unsupported.

In South Africa, disability that results from a rare disease like SMA can be a challenge not only to finding depth of clinical knowledge, but also access to schooling and work, as Kerry discovered growing up.

But, though research into SMA is still relatively niche, Kerry has managed to thrive both as a student and, later, as an employee in a demanding professional environment.

Disability work support

As a determined, educated, and staunchly independent person, Kerry Walsh has been at pains to forge a career path in spite of the limitations enforced by both SMA and society’s view of careers for people with disabilities.

In this episode of Life at Sage, you’ll hear Kerry:

• Giving a view of rare diseases society can’t fail to ignore
• Championing disability work accommodations
• Discussing the amazing support she’s had from her family
• Stressing the importance of the right kind of disability ramp
• Talking about finding friendships and love as a person with a disability
• Forging a new disability definition for a more progressive working world

Listen to this episode if you’re looking for disability work support yourself, you’re the primary caregiver to a person with a rare disease, or you’re thinking about finding a disability work program for a friend or family member.

Learn more about Sage careers.