Nobody loves going to the emergency room (ER). Odds are, something bad happened that requires immediate attention. Here are a few tips for those with spinal muscular atrophy (SMA) to make the experience a little easier.

Advocate for Yourself

Unfortunately, emergency rooms are the opposite of a comfortable setting for an SMA patient. Most of the nurses and doctors are usually in a hurry, and if they move too quickly when treating a person with SMA, it increases the chance of being injured. Various staff members come in for different parts of the treatment process in the ER, and normally they are trying to move quickly to get to the next person in need.

No matter how exhausting or repetitive it may be, I tell every new face that enters the treatment area that careless movements could be a huge problem for someone like me. A little advocacy can save people from a simple mistake. Of course, you should also be ready to move as quickly as possible, since there are others in need.

Come Prepared for Comfort

Bring whatever easy-to-grab items you can that could make the stay better. I try to envision the entire hospital stay and what hiccups could arise at any point. If you prepare a list in advance of some items you might need, you may be able to gather them up more quickly.

In my case, a small pillow that I carry around for support is usually my go-to. If X-rays or other imaging scans are necessary, for example, what would help make the experience better? If the metallic table is too difficult to lay on, some hospitals offer a light cushion or sponge for support. I normally bring a blanket for safety purposes in case cushions are allowed, but none offered by the facility work for me.

There are plenty of valid considerations for people with SMA in a nonspecialized environment. Being prepared can make the entire ER experience a little easier — both physically and mentally.

Relay the Message

The top priority when getting to the hospital is always getting to a stable position. Once everything settles, it’s time to relay important messages to necessary parties. You should notify your family members, your employers or teachers, and your specialists early on. It is crucial, however, to choose a calm moment to let everyone know you’re in the ER. Relaying incorrect information, or relaying information in the wrong way, could startle people or cause a domino effect of misunderstandings.

It can be easy to forget to notify specialists, but it is important. A specialist can offer the hospital insights regarding your condition that can help the health care providers at the hospital take the best possible care of you.

Avoid Infection

Emergency rooms are germ-filled environments, so additional caution is necessary. For some people with SMA, avoiding sickness is imperative: Infections could have long-lasting effects. Though thinking about it under dire circumstances can be hard, having protective gear is always valuable in these environments. I try to carry sanitary items such as masks, disposable gloves, and hand sanitizer as an extra layer of protection.

Emergencies can happen at any time. A calm mindset and a rough idea of what is necessary for the situation could help make the day a little better in the end.

Columnists on mySMAteam discuss SMA from a specific point of view. Columnists’ articles don’t reflect the opinions of mySMAteam staff, medical experts, partners, advertisers, or sponsors. Content on mySMAteam isn’t intended as a substitute for professional medical advice, diagnosis, or treatment.