Many teenagers want more privacy, their own space and as much independence from family as possible. These questions might be worth thinking about:

• Can you get to your bedroom independently? If not, what would make this possible?
• How easy is access between your bedroom and bathroom? Can it be improved?
• Do you have a quiet space that is well set up for you where you do your homework? If not, what change could there be?
• Where do you meet your friends at home? Is it private? Is there space for chatting, computer games, playing music?

In the children’s section, the page Your Home looks at other questions as well. They won’t all be relevant for you but they may set you thinking about:

• Anything that does not work well for you now
• What might become a problem
• What might work better for you.

If you let your parents know, they may be willing to look at what options might be possible. Some changes may be simple, others may need advice from an occupational therapist (OT). These can take a long time and need a lot of careful discussion.

Another big topic to think about, including:

• your sexual identity
• who you would like to meet
• how you might do that
• what sort of relationship you would like.

Read more >

Many young women who have SMA have questions about practical ways of managing periods and options for wheelchair users.Thank you to the those who have navigated this already and the medical professionals who have given us advice to pass on. Thank you also to Mia, Jordanne and Beth for the discussion here:

Recorded: October 2021

How can I manage my periods?

Your SMA has probably made intimate personal care from your parents and others a necessary part of your life. As you get older and your body changes, like many people, you might feel more self-conscious about the way your body looks. You might not like others seeing you unclothed. You need to trust and feel comfortable with the person who helps you.

Like any woman who has periods, you have the option of using towels, tampons or period pants. What people use is down to personal preference and what works for them. Women often try different options as well as different brands to find out. If you find it difficult to change your towel,  tampon or pants yourself, you will need someone to help you. You would need to change your towel or tampon roughly every four hours. This means you may need more visits to the toilet than usual and more personal care support during your periods.

At some point most women will experience cramps or pain when they have their period. Here are some ways to help relieve this:

• Dress comfortably, avoid tight clothes
• Lie down
• Gentle tummy massage
• Gentle stretching exercises
• Warm bath or shower
• Hot water bottle or heat pad
• Pain medication (check with your GP if you are not sure what is safe and suitable for you).

If your period pain is intense or you also have dizziness, nausea, diarrhoea, or vomiting during your period then do see your GP.

I’m struggling with managing my periods. What options are there?

Some young women with SMA find dealing with their periods difficult. This can be because of any or all of the following:

• heavy bleeding
• painful periods
• being uncomfortable with having personal care when they have a period
• finding it difficult to live their usual lifestyle when they have a period.

If, after giving yourself time to adjust, you still have period problems, you might want to find out about using a hormonal contraceptive. For example, a combined oral contraceptive pill (the pill). These are designed to prevent pregnancy. They either stop your periods altogether or make them easier to manage. Many young women find this helpful.

If you are not a wheelchair user, you have the option of using a pill prescribed by your GP.

If you are a wheelchair user, your GP may not be willing to prescribe you with the pill. This is because of the ‘UK Medical Eligibility Criteria for Contraceptive Use’ written by the Royal College of Obstetricians and Gynaecologists.

These guidelines say that due to being less mobile, wheelchair users have a risk of blood clots. This means that the risks to women wheelchair users of taking the combined oral contraceptive pill outweigh the advantages. You can ask for a referral to a gynaecologist to discuss this.

There are alternative options to the pill. Hopefully your GP will be able to provide you with information. This will enable you to make an informed decision about what will be suitable for you. Options include:

• IUS, or intrauterine system (sometimes called ‘the hormonal coil’) – fitted inside your womb
• Progestogen-only pill (also called the ‘mini pill’)
• Implanon (an implant) – about the size of a hairgrip inserted into your arm
• Contraceptive injection
• Contraceptive patch

Whichever option you have,  it is important to have regular check ups. You will be able to discuss how things are going and find what works best for you.

Using contraceptives to stop your periods should not cause any damage to your fertility but if you have any concerns about this, please discuss them with your GP.

General information

NHS website: Periods

Family Planning Association: Periods (pdf) 

All teenagers have a lot of changes and stresses to negotiate. 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 >

Most young people feel more self-conscious as they get older and go through puberty. They often do not like other people seeing their bodies. Having personal care from another person is probably a necessary part of your life due to your SMA. This can make this an even more challenging time for you.

Some young people continue to feel comfortable with parents and friends providing their personal care. In time, this may be from their partners. Others prefer their care from Personal Assistants (PAs) and to keep things on a more ‘professional’ basis. However, practically it is not always possible to find good reliable PAs.

You can read more about Employing PAs in the tab on the Adults Financial and PA Support page.