Choosing a college or university when you have SMA

Decisions about education are challenging for everyone. But when you or a loved one is living with a condition like spinal muscular atrophy (SMA), decisions about college will come with a few additional considerations.

Here, we look at what those considerations are, and pose some questions that may help parents and young adults with SMA who are thinking about college. While this may not answer the age-old question of “What do I want to do with my life?” it may help you figure out how to plan and prepare for the next few years.

What comes next?

When thinking about the next years of their life, many of the things a young person with SMA will need to consider are the same things that any person their age will need to consider. These include:

• Do I know what kind of job or career I want to have?
• What are the educational requirements for this career?
• Do I want to go to a college or university?
• What is important to me in life?
• What do I want to be doing in five years? In ten years?
• What academic subjects interest me?
• What extra-curricular activities are important to me?

These questions may be difficult to answer, or they may be easy. Every person is different. Keep in mind that you do not have to answer these questions entirely on your own. Teachers, coaches, counselors, advisors, and the other people in a young person’s life can provide insight and guidance.

Guidance is also an area where young people with SMA might have an advantage over their peers. SMA requires ongoing management, and people with the condition often work with a variety of healthcare providers. These providers can include neurologists, physical therapists, and a variety of other specialists. Consider reaching out to members of your healthcare team and talking about your plans for the future.

Choosing a school when you have SMA

Attending a college or university is a goal of many young people and for good reason—it offers opportunities to explore new interests, connect with others, and prepare for a career. When putting together a list of potential schools, there are the initial questions every person will need to answer:

• Does the school offer a program for my major? Does it offer extracurricular activities that I am interested in?
• What does tuition cost and how will I pay for it?
• Will I be happy there? Is the location, the size of the school, and social atmosphere what I am looking for?
• Do I want to go away to college, or do I want to stay closer to home?

In addition to these questions, people with SMA will have additional considerations. While everyone’s needs and interests and goals are unique, people with SMA may also need to think about:

• How will I access healthcare during school? This may include physical therapy, filling prescriptions, or visiting a healthcare provider for treatment.
• What does accessibility look like at the school? Will I be able to get around if I need to use an assisted device such as standers or a wheelchair?
• Are there other students with chronic illnesses or conditions? What is their experience at the school? Are there any on-campus organizations for people with health conditions and/or disabilities?
• What healthcare resources are available on campus?
• Will I be able to meet the demands of each semester while keeping up with managing and treating SMA?

These are a number of people who can help you answer these questions about a particular school, including admissions advisors, current students, former students, and members of the faculty in the program you are looking to major in.