You may already be talking to you parents about how your needs are changing – some of this will be due to your SMA and how this is impacting on you; some will be about wanting more privacy and your own space. It might be:

• Where is your bedroom? Can you get there independently?
• Where is the bathroom? How easy is access between your bedroom and bathroom?
• Where do you do your homework? Is it a quiet space that’s well set up for you?
• Where can you meet friends? In your bedroom? Another room? What privacy do you have when you meet up?

We have a website section about Your Home (in this section) and how well it’s working for parents of children which discusses 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 into what options might be possible. Some changes may be simple, others may need advice from an occupational therapist (OT) and can take a long time and need a lot of careful discussion.

Another big topic to think about  – your sexual identity, who you would like to meet, how you might do that and 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 (see below) and to Mia, Jordanne and Beth for the discussion here:

Recorded: October 2021

There’s more general information in the health section of the NHS website: Periods

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 and 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 / pants yourself then you’ll need someone to help you. You would need to change your towel / tampon roughly every four hours, so 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 / 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 / shower
• Hot water bottle / heat pad
• Pain medication (if you’re not sure what’s safe and suitable for you, check with your GP)

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

It’s OK for you to ask for personal care to manage your periods in the way that will work best for you.

I’m struggling with managing my periods – what options are there?

Some young women with SMA have told us that they’ve found 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’re still having difficulties with your periods you might want to find out about the possibility of using a hormonal contraceptive, for example a combined pill. These are designed to prevent pregnancy and either stop your periods altogether or make them easier to manage. Many young women find this helpful. If you’re under age 16, your parents / guardians will need to be involved in discussions.

Women who are non-wheelchair users have the option of using a combined oral contraceptive pill (the pill) prescribed by their GP. There are several different types, some of which can stop periods altogether, or at least make them more manageable.

The ‘UK Medical Eligibility Criteria for Contraceptive Use’ written by the Royal College of Obstetricians and Gynaecologists provides guidelines for health professionals such as GPs on prescribing contraceptives. The guidelines state that due to being less mobile, wheelchair users have a risk of blood clots and that therefore the risks to women wheelchair users of taking the combined oral contraceptive pill outweigh the advantages. GPs following this guidance may therefore not prescribe you with the pill. You can however ask to discuss this further with a gynaecologist – a doctor specialising in women’s health (if you’re under 16 your parents / guardians will need to be involved).

There are alternative options to the pill and hopefully your GP will be able to provide you with information on these to enable you to make an informed decision about what will be suitable for you. These 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 and your doctor (and if you’re under age 16, your parents / guardians) decide on, it’s important to have regular checks to discuss how things are going and find what works best for you.

Using contraceptives to stop your periods shouldn’t cause any damage to your fertility but if you have any concerns about this please discuss them with your GP.

You can ask your GP to make a referral to a gynaecologist for more specialised information on contraceptives that are suitable for your individual needs. If you’re under age 16, your parents need to agree.

You can also ask to speak to a neuromuscular care advisor when you attend your SMA clinic as they may have experience of what other young women have found helpful.

Other more general sources of information

Contact for Families with Disabled Children: Growing up, sex and relationships (pdf)

Family Planning Association: Periods (pdf) 

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…

Most young people feel more self-conscious at some time 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, so this can be an even more challenging time for you.

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

Whoever is providing your care, it is important you trust and feel comfortable with them. If you have any concerns at all about the way someone cares for you, make sure to tell and talk with someone you trust.

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