Being an adolescent or young adult with spinal muscular atrophy (SMA) presents unique challenges, according to a study based on viewpoints expressed by patients ages 12 to 25.
“‘I have SMA, SMA doesn’t have me’: a qualitative snapshot into the challenges, successes, and quality of life of adolescents and young adults with SMA” was published in the Orphanet Journal of Rare Diseases.
This study detailed results of a survey conducted by Cure SMA in 2018. It consisted of four open-ended questions of challenges young people with this disease face, how SMA affects schooling and socializing, and potential resources that could improve quality of life.
A total of 85 people responded to the survey — 44 adolescents (ages 12 to 18; mean age of 15) and 41 young adults (ages 19 to 25; mean age of 21). Six were diagnosed with type 1 SMA, 58 with type 2, and 21 with type 3. Of these respondents, 53 were females, 31 were male, and one identified as non-binary.
The most common challenge noted by respondents was a loss of independence and a subsequent need to depend on others. This was particularly felt by those unable to walk.
“It’s the fact that you always have to rely on someone that starts to become overwhelming,” one respondent wrote.
Other commonly noted challenges included accessibility, fatigue, and social concerns. Less frequently noted difficulties included pain, physical symptoms, and difficulty finding appropriate care — the latter more common among young adults than adolescents.
Some respondents said that SMA affected their schooling, with accessibility, aid and assistance, homeschooling, and fatigue being common concerns. For instance, some respondents noted that they required one-on-one aid or other accommodations that were difficult to get in conventional educational structures.
“I stopped going to public school, now I do it at home. They put me with all of the other special needs kids because I was in a wheelchair,” wrote one respondent.
Still, many of these young people — especially those with greater physical abilities — felt that SMA did not hamper their ability to become educated and attend schools of their choice.
“SMA does not affect my schooling. I am currently enrolled in college and taking 14 units on campus,” one respondent said.
Similarly, some felt no particular limits on their social lives, while others reported a substantial impact. Accessibility, in particular, was noted as a common problem.
“It [SMA] does not really affect my social life because my friends are cool,” wrote one respondent.
Another said: “Since I use a wheelchair now, I have to think about accessibility. Are my friends’ homes accessible for me? Are the locations of social activities accessible? I definitely won’t have the same amount of independence as a sixteen-year-old who doesn’t have SMA.”
Other common themes related to socialization and included difficulties with communication, and fears of being judged or misunderstood. Sensitivities that touched on mental well-being, in general, were frequently noted.
“Many adults and teens speak to me as though I’m much younger or will talk to the person I’m with acting as though I’m not really there,” said one respondent.
“I feel like people judge me just by seeing the wheelchair. People treat me like I’m a baby or mentally disabled or too innocent and I’m none of those things!” another wrote.
Resources seen as lacking or insufficient by young people with SMA included peer support groups, or the similar “big/little buddy” support programs that pair a youth with SMA with an older SMA person, someone who could provide guidance and support.
“A group where we can just talk to each other about the issues we have, how we deal with them, joke with each other, and just connect over it,” was the preference expressed by one respondent.
Many others reported a desire for more support with higher education or living independently.
“As an adult I have met others with SMA who were surprised I went to college and lived independently,” one respondent wrote, noting a need for “more info on going to college independently.”
Cure SMA also invited adolescents and young adults with SMA in 2018 to submit a short video of themselves describing their experiences. Six videos arrived — four from teenagers and two from young adults. Five were by young people with type 2 SMA, and one with type 3.
Generally, opinions expressed in the videos were similar to responses given in the survey. The study’s authors — all with Cure SMA — noted that the impact of the disease on social life was a major theme of discussion, accounting for at least one-fifth of the discussion across all six videos.
“I realized that not being included was much harder than it seemed to be. It’s not that I was bullied, but that no one wanted me to be their friend,” said one respondent.
“I have a few really close friends, and they’re absolutely my best friends,” said another. “I think that we’re closer than someone who wasn’t in a wheelchair because they walk through SMA with me.”
Another theme noted in the videos, and to a lesser extent in some survey responses, was the importance of overcoming adversity and fighting on despite challenges.
“My family and I, we love to get out and travel. We don’t let inaccessible routes or people tell us ‘You can’t go that way.’ Usually, we figure out a way to do it,” one respondent said. “There are challenges, but there are ways to help. That’s what SMA is all about.”
“If you want to live twenty hours away from your parents, go for it,” said another. “If you want to go hunting for [sic] your dad, do it. If you want to go skydiving, why not? My only advice is, don’t be afraid of a challenge. Be excited for it.”
Among other points that might guide care and resources, these findings “point to gaps and tangible opportunities to guide patient organizations and other key SMA stakeholders to generate important community and school resources that may help to improve the experience of teens and young adults living with SMA,” the study concluded.
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