The way SMA impacts young people  has changed since treatments started. This has meant that the way the condition is managed and the care needed has also changed. This is why expert clinicians and patient representatives are now agreeing on new guidelines for care for children, young people and adults.

There are many areas to think about – from managing the impact on breathing, spine & hips, exercise & activity to nutrition.

Guidelines will generally be about how to manage symptoms. Some guidelines will be related to other important information about the impact of a person’s SMA. Age may also matter for some.

In the meantime, talk to your clinical team and parents or carers if you have any questions or concerns about your health.

These cover a range of topics that may be of interest. They include ones on drug treatments, diet and exercise

Watch and listen now >

All teenagers have a lot of changes and stresses to negotiate, but your SMA and the impact it has on you means you have a lot more than most. It’s good to talk and get support.

Read more >

Some young people who have SMA have difficulty opening their mouths and with swallowing. This can make cleaning teeth and dental care challenging. Added to this, local dentists may not be wheelchair accessible. They may not be set up to treat anyone who needs careful positioning.

You may need to be seen by the NHS Special Care Dental Service. Ask your speech language therapist, dietitian or other member of your clinical team or your GP for advice.

Your views and how you feel about any treatment and plans to manage your SMA are really important. Your parents, medical team and GP will want to know what you think.

Anyone with SMA should have an Emergency Healthcare Plan (EHP). This is a written plan of action that any medical team can follow if the person becomes unwell. It’s important, for example, that school knows about your plan. It has to be reviewed and updated regularly. If you haven’t been very involved so far you may want to be next time it’s being discussed.

It’s best to agree your plan while you’re well. As a general guide your discussions and plan should cover information about:

• Your parents’ or guardians’ contact details – all their phone and mobile numbers
• What the warning signs would be that would mean you should be taken to hospital
• Who in your medical team should be contacted in case of an emergency
• The best way to manage your breathing if might be hard to manage in an emergency
• Any difficulties you have moving your neck and jaw. This is so that any medical team helping you in an emergency knows what positions may be difficult for you
• What day-to-day care you have. What equipment and medications you use to keep well. How and when these are used
• What food and fluids you have. How you have them. How often you should have them during any illness
• When and which antibiotics are OK for you.

If managing your SMA is hard, your parents or guardians may have already talked to your local emergency medical services . They will have told them about your needs and what equipment you use at home. Your GP may have helped set this up.

If you do have a health emergency, you should be taken to the closest hospital. Wherever possible, the equipment you use at home should be used. This is even if you’re taken in an ambulance that is well equipped.

Sometimes you may need to go to Accident and Emergency (A&E) Services at a local hospital. Often clinical staff there won’t know about SMA. We have an information sheet for you or your parents to give to the A&E team. It provides information that will assist them with their assessment of your needs. You and / or your parents can download this and have it ready on your phone, or bookmark it:

Essential Information for Emergency Services when Assessing and Caring for a Child who has Spinal Muscular Atrophy >

If your SMA is hard to manage, you may be transferred to your specialist hospital. They are better able to look after you.