What Diagnosis Means

Any SMA diagnosis may bring a lot of uncertainty. And many factors make it difficult to predict exactly what the diagnosis will mean for you and your family.

Type of SMA

There are four different types of SMA. SMA type I is the most severe and also the most common. Babies with type I usually face greater physical challenges than individuals with other types of SMA. The expected lifespan of a child with SMA type I can vary dramatically based on many factors.

Individuals with SMA type II, III, or IV often have normal or near-normal lifespans. But their physical abilities differ, since no two cases are exactly alike, and their abilities may change over time. Although SMA is not generally regarded as a progressive disease, individuals with SMA typically lose function as muscles continue to weaken.

Course of Care and Treatment

All families affected by SMA must make many decisions about care and treatment. Currently, Spinraza is the only FDA-approved treatment for SMA. In addition, there are a number of care options available for issues including palliative care, breathing, eating, and more.

Cure SMA does not advocate any specific choices or decisions; we are here for anyone who wishes to talk through their options. All decisions related to SMA are highly personal, and every family needs to do what’s best for them.  

These decisions are best made with the assistance of an interdisciplinary team, which may include a neurologist, nurse or nurse practitioner, pulmonologist, orthopedist, genetic counselor, physical or occupational therapist, nutritionist, and social worker. Your interdisciplinary team can help your family develop specific goals that align with your values and priorities for your child and family. Many families may also seek guidance from a counselor or spiritual advisor.

Personal Values and Quality of Life

When facing an SMA diagnosis, we encourage families to make decisions that will maximize their quality of life, acknowledging that may mean something different for each family. Our goal is to give families the information and resources they need to live active, engaged, and hopeful lives. SMA does not affect a person’s ability to think, learn, and build relationships with others.  

Children with SMA should participate in as many age- and developmentally-appropriate activities as possible, with adaptations made when necessary. Children with SMA can reach their utmost potential in school, at home, and in their communities.

Likewise, adults with SMA can attend college, excel in their chosen career fields, enjoy travel and recreation, and build relationships just as anyone else can. Modifications may be necessary to accommodate their physical abilities. For example, a car or van can be fitted with special equipment allowing an adult with SMA to drive. SMA should not prevent them from reaching their utmost potential in the workplace, at home, and in their communities. 

Remember:

Every family has the right to receive support. They have the right to ask questions. They have the right to refuse or request certain treatments, or to change their mind. They have the right to make decisions in accordance with their own values and priorities.

For more information on an SMA diagnosis and what sort of support is available, please contact familysupport@curesma.org, or call 800.886.1762 and ask to speak with a member of our family support staff.

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