Living with Duchenne affects the whole body, and staying on top of your physical health can feel like a full time job. This page covers some of the key areas to be aware of - from breathing and skin care to managing fatigue and knowing when to seek help, it's not a substitute for medical advice, but it's here to give you a starting point and help you feel more prepared.
Breathing is one of the most important things to monitor when living with Duchenne. As the respiratory muscles weaken over time, it becomes harder for the lungs to work effectively - especially during sleep or illness. Regular check ups with your respiratory team are essential, and if you're been prescribed breathing equipment such as a coughassist device or NIV (non invasive ventilation), using it as directed makes a real difference.
Seek medical help promptly if your breathing feels harder than usual, if you develop a chest infection, if your equipment doesn't seem to be helping as much as it normally does. Chest infections can escalate quickly with DMD so don't wait it out.
Fatigue is one of the most common and often underestimated challenges of living with Duchenne. It's not just about feeling tired - it can affect concentration, mood, and your ability to get through the day. The key is learning to pace yourself and plan ahead.
Think about where your energy is best spent each day and don't be afraid to say no to things that will drain you unnecessarily. Short rests throughout the day can be more effective than one long sleep. If fatigue is significantly affecting your quality of life,raise it with your care team - there may be factors like breathing quality overnight or medication that can be looked at.
Skin care is something that's easy to overlook but really important, especially if you spend long periods of time in a wheelchair or bed. Pressure sores can develop quickly, and take a long time to heal, so prevention is far better than treatment.
Regular position changes are key - try to shift position at least every couple of hours if possible, or have your carers assist with. Check pressure areas like the base of the spine, hips, heals and elbows regulary for any redness or soreness. Make sure you're using the right cushions and mattress for your needs - your occupational therapist can advise on this if your not sure what's suitable.
Managing multiple appointments across different specialists can be overwhelming. A little preparation goes a long way in making those appointments as useful as possible.
Before each appointment, try to write down any symptoms you've noticed, any changes since your last visit, questions you want answered, and any concerns about your current medication or equipment. Taking someone with you can also help they can take notes or remind you of things you might forget in the moment. If you have a patient-held record or health record. Keep it updated and bring it along.
It's not always easy to know when something needs urgent attention versus when it can wait for a routine appointments. As a general guide contact a healthcare professional promptly if you notice.
• Worsening or more effortful breathing especially at night.
• signs of a chest infection such as increased mucus, fever, or a persistent cough.
• New or worsening skin breakdown or pressure sores.
• unexpected changes in how your body feels or functions.
• Equipment that doesn't seem to be working as it should.
If in doubt, always reach out. It's much better to flag something early than to wait until it becomes a bigger problem.
Looking after your physical health is about more than just managing symptoms - it's about protecting your independence. You don't have to manage it alone. Lean on your care team, ask questions, and use the resources available to you. You deserve good care, and advocating for yourself is one of the most important things you can do.
