SMA Atlas

Navigating life with SMA after treatment

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SMA Atlas

Navigating life with SMA after treatment

Staying connected while staying home

Ryker, who was diagnosed with SMA Type 1, laughing in his dad's arms

Avoiding contagious respiratory illnesses is important for families with spinal muscular atrophy (SMA), particularly during high-risk periods such as the COVID-19 pandemic. However, many families are self-isolating for the first time and are now experiencing what caregivers and families with SMA deal with on a regular basis. With this deeper understanding about the burdens of self-isolating comes an opportunity to share advice about feeling disconnected from friends and family. Fortunately, with some creativity and a willingness to try new things, you can still be a part of what’s going on. Here are some tips from SMA caregivers on ways to stay connected while staying home:

Virtual communications

  • Zoom, FaceTime, Skype, and dozens of other options exist to allow you to communicate with your friends and family. These platforms are a great way to have some face-to-face interaction without any risk of exposure for your child.

Make it a game

  • To add an extra element of fun to your virtual calls, try creating a game out of them. Play a round of “I Spy” or hide a funny object in the background to give the person on the other end a unique challenge.
  • Another good way to stay in touch with friends and have a great time is to play video games online. If you don’t have any video games, try to track down an online version of your favorite board game.

Snail mail greeting cards

  • In an increasingly digital age, sending a card in the mail is always a nice gesture that has a personal and heartfelt impact. Block off some arts and crafts time as a family to create some colorful cards, drop them in the mailbox, and wait for your friends to receive your surprise hello!

Care packages

  • As a family with SMA, you know that quality care is a top priority for your child. A great way to demonstrate quality care to family and friends is to pay it forward! Put together a care package with some of the things you use to stay happy and healthy during times of isolation and send it off to a loved one. It doubles as a great way to show a small slice of your everyday life!

Wi-Fi digital picture frames

  • This is a very easy-to-find and simple gift that has unlimited potential for fun. Not only can these picture frames cycle through hundreds of digital photos of friends and family, but some of them even allow you to send photos to other frames. Surprise someone you know with a silly photo and keep an eye on your own frame for their answer!

Socially distanced gatherings

  • If you have a large backyard or patio and the temperatures are mild, it may be safe to invite a few people over for a short visit. As long as you maintain a safe distance, practice good hygiene (ie, washing hands with soap and water), and wear a mask, having people come to you will help you feel at the center of your social circle. Follow recommendations from your child’s doctor.

Declining invitations

While it feels great to be invited to catch up with friends and spend time with loved ones, sometimes it will be necessary to decline an invitation. It may be disappointing to send regrets, but there are several ways to still acknowledge that it was nice to be invited:

Express your family’s priorities

  • Natalie, mother of Eli who was diagnosed with SMA Type 1, says, “An easy way to politely decline is to say something like, ‘Thanks for the invite, but we are being extra cautious for our family at the moment.’ Or, ‘We appreciate that you are thinking of us, but I have to decline right now for health reasons.’”

Offer a rain check

  • To show that you’re still eager to catch up when the circumstances are better for your child, set an alternate date. Having a concrete day to try again shows that you are determined to eventually accept an invitation.

Suggest an alternative

  • If you can’t accept an invitation “as is,” offer a modified version that takes into account the specific concerns you have about health and safety. For example, you can ask to remain socially distanced or attend virtually.

It can be difficult to maintain friendships while navigating times of isolation, but the silver lining is that it provides a great opportunity to educate your loved ones about your life choices. A few last pieces of advice from SMA caregivers: Practice good hygiene, make smart choices for your family, and be honest about your reasons for declining invitations so they are sure to keep rolling in.

A paper family holding hands

Fun for the whole family

Finding activities and entertainment that are inclusive for both children with and without SMA can be a challenge. Read the top suggestions from SMA caregivers about fun things to do for the entire family.

Malachi, who was diagnosed with SMA Type 1, in a gait trainer

Advocacy doesn’t stop after treatment

Even though a child receives treatment for his or her SMA, it doesn’t mean their care stops. Hear from SMA caregivers about how they learned to be strong advocates for their children in the years following treatment.

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Important Safety Information

What is the most important information I should know about ZOLGENSMA?

  • ZOLGENSMA can cause acute serious liver injury. Liver enzymes could become elevated and may reflect acute serious liver injury in children who receive ZOLGENSMA.
  • Patients will receive an oral corticosteroid before and after infusion with ZOLGENSMA and will undergo regular blood tests to monitor liver function.

Important Safety Information

What is the most important information I should know about ZOLGENSMA?

  • ZOLGENSMA can cause acute serious liver injury. Liver enzymes could become elevated and may reflect acute serious liver injury in children who receive ZOLGENSMA.
  • Patients will receive an oral corticosteroid before and after infusion with ZOLGENSMA and will undergo regular blood tests to monitor liver function.
  • Contact the patient’s doctor immediately if the patient’s skin and/or whites of the eyes appear yellowish, or if the patient misses a dose of the corticosteroid or vomits it up.

What should I watch for before and after infusion with ZOLGENSMA?

  • Viral respiratory infections before or after ZOLGENSMA infusion can lead to more serious complications. Contact the patient’s doctor immediately if you see signs of a possible viral respiratory infection such as coughing, wheezing, sneezing, runny nose, sore throat, or fever.
  • Decreased platelet counts could occur following infusion with ZOLGENSMA. Seek immediate medical attention if a patient experiences unexpected bleeding or bruising.

What do I need to know about vaccinations and ZOLGENSMA?

  • Talk with the patient’s doctor to decide if adjustments to the vaccination schedule are needed to accommodate treatment with a corticosteroid.
  • Protection against respiratory syncytial virus (RSV) is recommended.

Do I need to take precautions with the patient’s bodily waste?

Temporarily, small amounts of ZOLGENSMA may be found in the patient’s stool. Use good hand hygiene when coming into direct contact with bodily waste for 1 month after infusion with ZOLGENSMA. Disposable diapers should be sealed in disposable trash bags and thrown out with regular trash.

What are the possible or likely side effects of ZOLGENSMA?

The most common side effects that occurred in patients treated with ZOLGENSMA were elevated liver enzymes and vomiting.

Indication

What is ZOLGENSMA?
ZOLGENSMA is a prescription gene therapy used to treat children less than 2 years old with spinal muscular atrophy (SMA). ZOLGENSMA is given as a one-time infusion into a vein. ZOLGENSMA was not evaluated in patients with advanced SMA.

The safety information provided here is not comprehensive. Talk to the patient’s doctor about any side effects that bother the patient or that don’t go away.

You are encouraged to report suspected side effects by contacting the FDA at 1-800-FDA-1088 or www.fda.gov/medwatch, or AveXis at 833-828-3947.

Please see the Full Prescribing Information.